[HN Gopher] Drugmakers are set to pay 23andMe to access consumer...
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Drugmakers are set to pay 23andMe to access consumer DNA
Author : htrp
Score : 340 points
Date : 2023-10-30 21:59 UTC (1 days ago)
(HTM) web link (www.bloomberg.com)
(TXT) w3m dump (www.bloomberg.com)
| amacalac wrote:
| Insert <This is fine> meme here
| ddmma wrote:
| Billions at least
| daoboy wrote:
| https://archive.ph/CeLJZ
|
| "Any discoveries GSK makes with the 23andMe data will now be
| solely owned by the British pharmaceutical giant, while the
| genetic-testing company will be eligible for royalties on some
| projects."
| graphe wrote:
| No different from the sample of cancer they got from cell
| lines. After all, Steve jobs father only contributed DNA data,
| he isn't going to receive royalties or any benefits from his
| genetic data's activity.
| 26fingies wrote:
| You know what would be fun? If we could see where all of our
| ancestors were from...
|
| - Police arrest my cousin for getting a paper cut during a home
| robbery
|
| - Hackers sell my DNA on the internet
|
| - Drugmakers make new and exciting opiates that are especially
| addictive for me alone
| Obscurity4340 wrote:
| I wish more people did this. Examples rule
| fred_is_fred wrote:
| How difficult would it be with 2023 technology to produce DNA
| trace evidence for someone else given the sequenced information
| in these systems? Is there enough information there to do that,
| and if so, what are the technology hurdles?
| jacquesm wrote:
| 23andMe has - fortunately, and to the best of my knowledge -
| not done any whole genome sequencing, they have made 'prints'
| ('Genotypes') that can be used to identify a person, but
| can't be used to re-sequence the DNA. That said: they do have
| your samples and there is a chance that they have made full
| sequences of select samples. But whole genome sequencing is
| still expensive enough that they would not be able to do this
| today. But given a few years advances in readers and someone
| with access to the samples could re-run all of them and
| obtain full sequences for their whole sample inventory.
| dekhn wrote:
| They did WGS for a research project. BUt it's not part of
| their normal product line.
| fred_is_fred wrote:
| Am I right that sequencing the DNA is one thing but
| manufacturing or copying? that DNA to produce enough to
| falsify evidence would be much more difficult - in a
| Gattica type scenario?
| RocketOne wrote:
| I'd go all in on the most nefarious - hacked data could be used
| to design a virus that only kills people with one particular
| genetic trait.
|
| I'm pretty sure there's an uber dystopian horror movie in there
| somewhere.
| Centigonal wrote:
| There's a dystopian sci-fi tactical espionage action game
| (from 1998!) that features exactly this
|
| https://www.youtube.com/watch?v=oTjI2LV0Tus&t=56
| alistairSH wrote:
| The Silo series of books was based around a similar plot
| device.
|
| https://en.m.wikipedia.org/wiki/Silo_(series)
| heavyset_go wrote:
| This isn't even dystopian sci-fi, nations already investigate
| bioweapons that are designed to target only certain racial
| groups.
| dekhn wrote:
| Do you have a credible source for this claim?
| heavyset_go wrote:
| - https://www.armyupress.army.mil/Journals/Military-
| Review/Dir...
|
| - https://www.nationalreview.com/corner/the-coming-
| threat-of-a...
|
| There's also an outline with references here:
| https://en.wikipedia.org/wiki/Ethnic_bioweapon
| dekhn wrote:
| I don't see anything credible there about nation-states
| currently engaging in this research. I think generally it
| does not appear to be a productive line of research.
| heavyset_go wrote:
| I said "investigate", and all of the links are about
| nations investigating such bioweapons.
| maxerickson wrote:
| Preventing a database from existing isn't gonna stop people
| with that capability. If they can make the targeted virus,
| they can forcefully obtain enough genetic samples from their
| targets to determine the information they need to do so.
|
| The idea that a small technical road block will protect
| society from horrors is misguided.
|
| Like it wasn't great for people that were identified in
| government registers as being in groups that the Nazis
| targeted, but they would have made up targets just the same
| of there were no government registers.
| hirvi74 wrote:
| > You know what would be fun? If we could see where all of our
| ancestors were from
|
| That is the part I could never understand. Maybe I have jumped
| to too many conclusions in my past.
|
| So, you send your DNA and your results say you are 25% Irish or
| whatever broad "Northwestern European" category you are lumped
| into.
|
| Okay, cool. . . But that does really make you "Irish" like
| someone that was born and raised in Ireland? Someone who grew
| up immersed in the culture, history, languages, etc.? Go tell
| someone from Ireland that you took a DNA test and that you are
| part Irish. I guarantee they would not care, probably hear it
| all the time from Americans, and would not think of you as one
| of them.
|
| Another aspect about ancestry that has always bothered me is
| that I feel like it's a socially acceptable version of
| Nationalism-lite/Racism-lite.
|
| "I am proud to be of Italian descent!"
|
| Why? Do you think Italians are better than other people? You
| didn't do anything to earn your heritage, and sure, Italians --
| like all cultures -- have made wonderful contributions to
| humanity, but those contributions were more than likely due to
| their culture and resources vs. the DNA in their cells.
|
| "Wow! I two of my grandparents from 5 generations ago were
| German"
|
| Cool, except Germany was only established in 1867, so they
| probably were Germanic people, but not "German" like one
| thinks. After all, countries are just lines on a map.
|
| Lastly, aren't all people with European ancestry related by at
| least one common ancestor if you go back like 500-1000 years? I
| think if you go back like 2000 years or something, everyone on
| Earth shares at least one common ancestor. So, regardless of
| what the DNA tests say about your ancestor 4x generations back
| or however far back they go, we're all related anyway, and
| maybe we should start acting like that towards one another.
|
| Seriously, what's the appeal to these tests? I can understand
| health information slightly more, but couldn't a hospital do
| that for you?
| karaterobot wrote:
| https://archive.ph/CeLJZ
|
| After reading the article, it looks to me like giving access to
| this data is _not_ what 's new, it's that the contractual terms
| of the existing agreement have changed. That is, it seems like
| 23AndMe already gives access of some form to pharmaceutical
| research companies.
|
| Two questions I had:
|
| * I'm vaguely familiar with the challenges of anonymizing omics
| data, and I'm wondering how they expect to make someone's entire
| genetic profile sufficiently anonymous or deidentified. All I've
| seen from them is one of their example reports, and you could
| take the name off one of those, and it seems like it would still
| be pretty easy to reidentify the subject just from that high
| level report, let alone from the raw data.
|
| * When they say these are users who have opted in to data
| sharing, I wonder what form that actually takes. Is this one of
| those things where everybody who uses 23AndMe is opting in? Did
| these 14 million users all actually provide informed, active
| consent? I assume that to maximize the value of that data,
| 23AndMe is incentivized to interpret consent as broadly (and
| vaguely) as possible.
| ghayes wrote:
| My biggest concern is that my siblings and parents have all
| signed up. So (more or less) my DNA is in this database, even
| though I have never interacted with the organization.
| jacquesm wrote:
| Yes, I wrote about that when this all first started
| happening. Not that anybody cared... it doesn't take a whole
| lot to be able to identify you given some samples of your
| extended family. And as a means of elimination it will be
| extremely effective.
|
| Gattaca is an amazing movie, it has aged so well I find
| myself having more and more appreciation for the amount of
| thought that went into the script.
| maxerickson wrote:
| Gattaca is about the senselessness of the dystopia, not the
| inevitability of it!
| jacquesm wrote:
| Yes, I know what it is about. But what gets me is how
| incredibly prescient it all is, we're pretty much running
| headlong into this future without any ethical framework
| to guide any of it. It's a free-for-all right now, as if
| the new frontier of the Wild West re-opened. Reminiscent
| of the early days of the web. But Gattaca seems to be
| used as a blueprint rather than a warning.
| maxerickson wrote:
| The horrors of using information for research?
|
| I'm on board with the idea that it's going to be
| difficult to make the opt in on something like this
| respectful of the actual wishes of the participants, but
| they are at least partly working in that direction.
| jacquesm wrote:
| No, the horrors of the potential downsides associated
| with the abuse of that information and the fact that once
| it is out of the bag you can't put it back in.
|
| It's never about the data itself, it's about what the
| worst possible groups can do with it given some nation
| state backing.
| heavyset_go wrote:
| > _But Gattaca seems to be used as a blueprint rather
| than a warning._
|
| There's a founder of a genetic sequencing and embryo
| selection start up that I talked to who said they were
| "inspired by Gattaca" and isn't shy about bringing that
| inspiration up[1] at any opportunity.
|
| Their company's promotional material also isn't shy about
| selecting embryos for predicted intelligence, height,
| etc.
|
| [1] https://nypost.com/2019/11/09/genetic-test-aims-to-
| predict-a...
| Tangurena2 wrote:
| We keep creating the Torment Nexus. Because someone can
| profit from it, therefore someone _must_ profit from it.
| digging wrote:
| > Did these 14 million users all actually provide informed,
| active consent?
|
| Virtually impossible, even without preconceived notions of this
| company's ethics (which... should be obvious), because it's
| actually very difficult to get informed consent. Not only does
| it take longer and more work to get the consent, you'd actually
| have to work pretty hard to _define_ a system that >90% of
| people would consider true informed consent. There's no
| blueprint for it in the corporate world. The default consent-
| getting is so bad that even doing a bad job can look amazingly
| progressive in comparison.
| dekhn wrote:
| 23&me's consent form is excellent and a paragon for the
| field. https://www.23andme.com/about/consent/
| Chris2048 wrote:
| It's not clear to me this takes automatic effect, and
| actually states "If you agree to this consent" - I assume
| that users are given the option to consent or not?
|
| This seems to be the usual TOS -
| https://www.23andme.com/privacy/ and it says "We will not
| share your genetic data ... without your explicit consent."
|
| So the news here is "Drugmakers are set to pay 23andMe to
| access consumer DNA for consumers that have given their
| explicit consent to do so". Maybe the fact 23am is getting
| paid is considered a sour note here, but it doesn't seem
| this is otherwise underhanded.
| dekhn wrote:
| No, there's nothing underhanded here. 23&Me has never
| hidden its long term intention to use genetic data, from
| informed consent customers, to help solve diseases. To me
| the idea was obvious from before their founding, and it's
| amazing how long it took them to get to this point.
| cwales95 wrote:
| This is precisely why I will never use one of these services. The
| thought of a company being able to _buy_ my DNA is beyond creepy.
| tspike wrote:
| Sadly, if your relatives are anything like mine, they have
| probably already made the decision for you.
| digging wrote:
| Just like letting people store your phone number in their
| contacts list... the only way to actually stay away from some
| of the most invasive companies is to live in isolation.
| jacquesm wrote:
| Who ever did not see this one coming when 23andMe launched was
| asleep at the switch. DNA databases are ripe for abuse and this
| is just another form of abuse. First they get you to _pay_ to
| give them your samples and then they get paid again to pass your
| data to other parties without obtaining your specific consent for
| that transfer.
|
| When 23andMe launched I was absolutely amazed at how HN and less
| technical audiences ran with it, the abuse potential - and that's
| before we get into 'hacker lifted your sequences or prints' - was
| blatantly obvious.
| donohoe wrote:
| Exactly this. Which is why I never used these services. The
| disappointment and betrayal is inevitable.
| RocketOne wrote:
| Even worse though, is that it doesnt even have to be you
| submitting your data. Several killers have been caught
| because their family members have submitted DNA and the
| killers have been tracked down using DNA ancestry. It really
| sucks, because it only takes one gullible person to really
| expose your family to data mining.
| User23 wrote:
| If you were born in a hospital your DNA is already
| collected[1]. You may as well benefit from it too.
|
| Also, bringing murderers to justice is a pretty odd thing
| to object to.
|
| [1] https://www.aclu.org/documents/newborn-dna-banking
| alistairSH wrote:
| Two wrongs don't make a right. I object to non-consensual
| collection of newborn DNA as well.
|
| And it's not bringing murderers to justice per se. It's
| the implications to others. I don't want MegaCorp
| extrapolating my medical history via my cousin's DNA.
| brnaftr361 wrote:
| Yeah, but now you're associated with a killer, whatever
| SNPs you share pile up into correlates.
|
| Insurance companies see you as feckless, lenders see you
| as risky, law enforcement sees you as a likely criminal,
| justice sees you as a burden.
|
| And maybe it wasn't even you that volunteered the sample.
| And maybe I share some of the SNPs, and maybe I have some
| countermutations, but they aren't properly analyzed. Now
| my feet are in the fire despite no predisposition to
| violence or recklessness just an association.
|
| This is one step and I expect another. For the greater
| good, for security, for the safety of the nation, for the
| children.
| celrod wrote:
| If any of my family members are secretly killers, I would
| not feel bad about them getting caught...
|
| But I would feel bad if, e.g., insurance premiums were to
| go up because I had inherited risk factors for some costly
| diseases.
| chunkyks wrote:
| Or even worse, premiums went up because you _could have_
| inherited costly diseases (but didn 't), and they have no
| way to verify it unless you also prostrate yourself on
| the altar of no privacy.
| lucubratory wrote:
| How confident are you that the government of the country
| you live in will use the ability to genetically trace the
| entire population through long range genetic scanning to
| harm only people you think deserve to be harmed? Keeping
| in mind that as long as these databases are allowed to
| exist, the genetic information itself remains relevant
| for hundreds of years?
|
| Basically, this let's the government put a tracker on
| every person as long as they can get to where that person
| was within a couple of months to years (depending on
| conditions), and every future government gets to decide
| exactly who should be subject to that level of
| surveillance, what crime is bad enough to justify it. Do
| you trust the government of the United States 100 years
| from now to be that aligned with your personal views?
| Zero concern that a Hitler-figure could arise in the US
| and use that power to exterminate large numbers of
| people?
| graphe wrote:
| I sure hope they don't use my DNA to catch any criminals. I
| hope they roam around undetected as before, I would never
| harbor any bad feelings towards any members of my family
| regardless of their rape, murder or other crimes. You don't
| want them in prison either, and wouldn't believe they did
| anything wrong regardless of the DNA and OTHER substantial
| evidence would you?
| ren_engineer wrote:
| founder was married to a Google founder, sister was CEO of
| YouTube for years. Only logical that the endgame would be
| monetizing user data
| toomuchtodo wrote:
| I willingly gave them my DNA. I want to support research and
| better drug development, and gave broad consent towards that
| end.
|
| (disclosure: also interviewed there over a decade ago and
| declined the offer only because of lacking comp, don't recall
| the name of their CTO around Jan 2011 but was a cool dude)
| ssteeper wrote:
| Did you intend to give your DNA to GSK PLC too? The company
| that bought the DNA data from 23andme is GSK PLC, the tenth
| largest pharmaceutical company and #294 on the 2022 Fortune
| Global 500.
|
| In 2012, GSK pleaded guilty to promotion of drugs for
| unapproved uses, failure to report safety data and kickbacks
| to physicians in the United States and agreed to pay a US$3
| billion (PS1.9bn) settlement. It was the largest health-care
| fraud case to date in the US and the largest settlement by a
| drug company.
|
| https://en.wikipedia.org/wiki/GSK_plc
| toomuchtodo wrote:
| I intended to give it to anyone 23andme would provide it
| to. I previously provided it to Harvard's Personal Genome
| Project, along with my lifetime medical records. More
| recently, Northwestern Medicine and a similar program in
| affiliation with the National Institute of Health
| ("AllOfUs").
|
| https://www.personalgenomes.org/
|
| https://www.joinallofus.org/
|
| https://www.joinallofus.org/learn-more
|
| I still want fraud prosecuted, regardless of entity.
| Complex problems are full of nuance. Are we here for sound
| bites? Or to solve complex problems?
| solardev wrote:
| Thank you! You mirrored my thought process exactly.
|
| Is there an open genome movement where you can just
| donate your genome into the public domain? I don't really
| care who has access to it, but it's a hassle to have to
| manually apply for each project that wants it.
| dekhn wrote:
| HMS PGP. https://my.pgp-hms.org/profile/hu80855C is my
| genome. It's effectively in the public domain.
| ssteeper wrote:
| Yes, it is complex. I agree that providing personal data
| to trustworthy research programs is beneficial to the
| public. Do you agree that providing detailed health data
| to untrustworthy corporations can easily become
| problematic? Because so far, you've made it sound like
| you don't see a reason for an individual to not provide
| their data to 23andme.
| toomuchtodo wrote:
| It is problematic but has no perfect solution, as there
| is no such thing as perfect security. Create data
| security and governance requirements contractually.
| Require the partner carry insurance as well as attest to
| and provide evidence of their controls and processes. If
| they fail to protect the data provided, require penalties
| outlined in the data processing agreement.
|
| Alternatively, 23andme could offer compute to pharma
| companies that can run against their genetic data lake,
| with DLP and data security controls between them and the
| pharma customer. This would minimize leakage potential
| while still allowing compute against the data.
| flandish wrote:
| I wish the data would be combined with things like
| Vanderbilt's BioVU databanks, etc, for actual
| translational research and not for swift for profit
| research. This is just another version of "socialized
| research privatized profit."
| bossyTeacher wrote:
| > I intended to give it to anyone 23andme would provide
| it to.
|
| So basically any big pharma or big insurance corporation
| because those are the ones that will get it eventually
| and will use it for their own profile without regards to
| any negative consequences for you or anyone else.
| lm28469 wrote:
| > I intended to give it to anyone 23andme would provide
| it to
|
| Your health insurance company for example ?
| toomuchtodo wrote:
| https://www.genome.gov/about-genomics/policy-
| issues/Genetic-...
|
| > The Genetic Information Nondiscrimination Act (GINA) of
| 2008 protects Americans from discrimination based on
| their genetic information in both health insurance (Title
| I) and employment (Title II). Title I amends the Employee
| Retirement Income Security Act of 1974 (ERISA), the
| Public Health Service Act (PHSA), and the Internal
| Revenue Code (IRC), through the Health Insurance
| Portability and Accountability Act of 1996 (HIPAA), as
| well as the Social Security Act, to prohibit health
| insurers from engaging in genetic discrimination. Title
| II of GINA is implemented by the Equal Employment
| Opportunity Commission (EEOC) and prevents employers from
| using genetic information in employment decisions and
| prevents employers from requesting and requiring genetic
| information from employees or those applying for jobs.
| lm28469 wrote:
| Abortion was also legal once upon a time
| aintgonnatakeit wrote:
| Of these things, only the safety part is relevant.
| Commercial hiccups like the rest are perpetrated by a
| different part of the organization.
| mandmandam wrote:
| That's not how accountability works.
| hackerlight wrote:
| Problem is that your relatives and ethnic group didn't
| consent yet your decision is impacting them too. Not talking
| about helping drugmakers make better drugs, I'm talking about
| the nefarious use-cases, such as the leak and the long-term
| consequences of that.
| hef19898 wrote:
| I'll never understand the degree of unearned trust start-ups
| tendbto get. Whatever they do, they have the benefit of the
| doubt. You want to contribute to research? Find and
| participate in a study for which you are a match. In that
| case, data is annonymized, and tailored to a specific disease
| / drug development / whatever.
|
| Sharing it, in a personalized manner, with a for-profit
| start-up without an alternative path to profitability is just
| so naive... Giving your DNA profile directly to the likes of
| GSK would be better.
| Mesmoria wrote:
| IIRC, wasnt this their stated intention from the beginning,
| along with a plan to virtually test against DNA?
| mustaflex wrote:
| I'm fairly uneducated in this area, can you explains in what
| ways our own DNAs will be used to our detriment by theses drug
| companies? (if will leave 23andMe and the likes out of the
| question)
| teachrdan wrote:
| I can think of one dystopian application off the top of my
| head.
|
| A pharmaceutical company develops a treatment for a terminal,
| currently-uncurable disease like Huntington's. Without your
| permission, they identify you as having the gene for
| Huntington's and pitch their drug to you.
|
| Many people at risk of Huntington's deliberately don't test
| for it, bc the prognosis is so bad and it causes so much
| anxiety to know you have it. A marketing campaign like this
| -- even with a drug with marginal benefits -- could be both
| very profitable and devastating.
|
| Bonus! The drug company itself wouldn't have to be the one to
| actually make the pitch to you. It could be a third-party
| pharma retailer who does it, selling the drug to you at a
| markup.
| golergka wrote:
| In most cases, being (truthfully) told that you have a
| disease and being offered a cure (at least attempted in
| good faith) is a good thing. Most people throughout history
| could only dream of something like this.
| DoreenMichele wrote:
| The problem is they don't _cure_ you of genetic
| disorders. They _treat_ you -- _forever_ , until you die.
|
| And God forbid you object to the side effects or quality
| of life this gets you.
| ryanklee wrote:
| Not really sure why this is nefarious. I'd rather be
| treated than die. And if I don't think the side effects
| are worth it, then I'm still free to die. What does this
| have to do with malice?
| DoreenMichele wrote:
| Most people see it like you see it. Long experience
| suggests it's probably not worth making a good faith
| effort to explain further.
| maxerickson wrote:
| The possibility of safely doing whole body gene therapy
| is barely past experimental so it's hard to understand
| what you might be trying to explain (it's gonna be hard
| to cure a genetic disorder some other way).
|
| Sure, an expensive drug to correct some issue with a
| protein is not the ideal solution, but it's just bizarre
| to cast something that represents tremendous progress as
| some kind of novel evil.
| ryanklee wrote:
| Wow, great answer. Why bother saying something
| unintuitive if you don't have the will to explain it?
| teachrdan wrote:
| Knowing about the diagnosis is itself the harm while
| there is no cure.
| ryanklee wrote:
| That is not at all related to my question.
| bossyTeacher wrote:
| treatment > cure
|
| That's the equation for big pharma. Now tell me you don't
| see a problem with this.
|
| If you don't, I will help, a treatment is more
| profitable. And you know what's even more profitable?
| Knowing that someone might need your treatment in the
| near future or far future. Because you can extract even
| more profit from the person.
|
| Yes, this means that you would get screened early but it
| also means that your healthcare costs would be much
| higher compared to now where most people (apart from US)
| only experience healthcare costs when they become old.
| Business models for early payment of potential treatments
| to offset the costs (don;t think hn crowd, think real
| people with real, see low, salaries) would likely become
| a reality. Now imagine being super healthy but 1/3 of
| your salary goes out to accommodation costs and another
| 1.5/3 goes to this futurist version of healthcare. It
| would absolutely devastate most people. Remember most
| people don't make the high salaries most HN folks make,
| they live paycheck to paycheck with barely enough to make
| ends meet.
|
| At this point, what's the point of working in cures when
| treatments are much better? This is like academics only
| working on original research, gets you a field where most
| of the studies cannot be replicated
| graphe wrote:
| The solution that's better is to die from it naturally.
| It's much preferred to side effects because??
| DoreenMichele wrote:
| No.
|
| The solution that's better is "Actually get me healthy."
|
| And once they have an expensive drug alleviating some of
| your symptoms while making them stinking rich, you are
| supposed to quit your bitching and be glad you aren't
| dead.
| graphe wrote:
| So if my insulin wasn't being produced, doctor told me, I
| should just die naturally instead of being grateful for
| insulin, because making someone rich is a greater sin?
| You're making very little sense.
| cool_dude85 wrote:
| As a society, the goal should be to make it so you don't
| need to pay some private company for insulin. Your
| condition would ideally be totally cured.
|
| Instead, the current state of affairs (where they make a
| bunch of money off you) is a sort of local maximum and
| there is very little incentive to research a genuine cure
| unless such a thing would be more profitable than present
| day.
| jacquesm wrote:
| No, you're arguing in bad faith. It's obvious that that
| wasn't what the OP meant. Besides, the insulin graft is
| an _excellent_ example of how in some countries people
| with a particular illness are just seen as dairy cows to
| be milked for every last cent: because life is priceless.
|
| In a just world - not the one we live in - medicine would
| be produced like every other bulk molecule, because
| that's really what it is. Insulin could cost ~ what you
| pay for some other complex chemical. But because of
| patents and various graft protecting industry practices
| depending on where you live you may be overpaying by many
| orders of magnitude for something that could be quite
| cheap.
| graphe wrote:
| Society is not my personal piggybank for help. Being born
| with a health condition already makes it an unjust world.
| Being entitled to other people's work by your own metric
| of payment is also unjust.
| bossyTeacher wrote:
| the point is that in a fair world, the cure for your
| condition would eventually be found and produced but in
| your world, it wouldn't hence you will be paying more and
| more for healthcare as the number of potential conditions
| you could have grows
| graphe wrote:
| In a fair world I wouldn't be born with a condition, and
| I wouldn't be entitled to someone else's work.
| raverbashing wrote:
| Yes because just snap your fingers and you get cured
| easily of a genetic disease, sure
|
| "they treat you forever" well I certainly hope so, given
| the alternative is snuffing out
|
| (yes yes I'll be the ones to agree that companies and
| researchers can be hard headed sometimes, but that's not
| why diseases go uncured - life and biology is not a
| tiktok video)
| lend000 wrote:
| I can't tell if this is satire. Big pharma is going to cure
| my Huntington's, and they're even tell me about it before I
| start to lose mobility? What's the catch?
| nvgeele wrote:
| My guess is they live in the US and they're making their
| argument under the assumption that the treatment will be
| enormously expensive and you will have to pay out of
| pocket for it. In that case you're caught between a rock
| and a hard place: will I die a slow and painful death due
| to genetical disease X, or do I go bankrupt paying for
| it.
|
| In many countries this is a genuine concern I guess. Even
| in multiple European countries with great healthcare and
| (nearly) free health insurance, "novel" (and often very
| expensive) treatments are not always covered.
| lend000 wrote:
| This meme of becoming bankrupt to pay for drugs doesn't
| hold water, especially in the long term.
|
| Look at HIV medications. It used to cost hundreds of
| thousands of dollars to stay afloat in the 90's, when the
| drugs were cutting edge.
|
| Fast forward 30 years, and you can find generic
| antivirals for $110/month. As patents expire, medicines
| become more affordable. HIV is slowly approaching "cured
| disease" status in the western world for new infections,
| and is an increasingly manageable disease for existing
| infections.
|
| It's better that some people could get the drug in the
| early days, funding the research that would save millions
| in the coming generation, even if others couldn't afford
| it.
|
| The logic in this thread is just flummoxing. So many
| people irrationally hate companies that make lots of
| money so vehemently, even if the companies profit by
| saving lives that would be guaranteed to suffer/die
| without that company's profit-seeking efforts.
| dekhn wrote:
| Insulin is a better example than HIV drugs in terms of
| drugs costing far more than they should.
| Fezzik wrote:
| It doesn't have to be to someone's detriment - it can just be
| unethical. The obvious agenda here is for a private company
| to use DNA data sets to develop/streamline drugs and profit
| handsomely (or write off any losses on their taxes). To me it
| is offensive that as a society we tolerate shit like this,
| but maybe I'm an outlier. Though, like most other commenters,
| I don't see how anyone who signed up for this service did not
| see this coming.
| taneq wrote:
| Imagine if your health cover suddenly started having blanket
| exclusions for everything you're genetically predisposed to.
| DoreenMichele wrote:
| Given how insurance works, this possibility should concern
| people more.
|
| Insurance is a _bet._ Like all gambling establishments in
| Las Vegas, they need to take in enough money to cover
| overhead, pay staff, pay off the (financial) "winners" and
| still turn a profit.
|
| If your genes guarantee you X problem, it's a "sucker's
| bet." There's no money to be made covering you. It's
| effectively _charity_ to let you buy coverage for a
| pittance knowing you will get a big payout.
|
| Even if you work for an insurance company, having a genetic
| disorder automatically disqualifies you from purchasing a
| lot of their policies.
| mook wrote:
| I suspect what will actually happen is that they'll take
| your money, but once you need the coverage _then_ they
| will suddenly realize that you're predisposed to that and
| refuse to hand out the money. That is, they will take the
| bet and then reuse the payout.
| DoreenMichele wrote:
| Touche.
|
| Someone even more cynical than me.
|
| /Still naive after all these years.
| taneq wrote:
| Oh, they'll still take your money, and they won't inform
| you explicitly that you're disqualified. Like all
| asymmetric information games, the way to 'win' insurance
| is to know more than the other party.
| bossyTeacher wrote:
| That's basically what would happen. So you would have any
| of the scenarios below
|
| 1. you pay higher because the info you provided them made
| them think that you are likely to be correlated with people
| that have genetic trait x which is linked to conditions w,
| y and z
|
| 2. you pay as normal, but when you want a payout because
| you suddenly have a condition for which you are genetically
| predisposed, you don't receive anything or receive a really
| small amount of money (small enough that they will make
| enough profit from you, but just enough that you won't sue
| immediately)
| tylergetsay wrote:
| This is already illegal though, directly by the Genetic
| Information Nondiscrimination Act, which passed 420 to 12.
| I'm not pro DNA collection by any means but this argument
| gets tossed around a lot and it's clearly undesirable to
| everybody, and we can change/set laws to prohibit it.
| Terr_ wrote:
| I can think of a few scenarios that have different
| conditions/threats:
|
| 1. Something that would normally be your own secret to
| control which is used against you, like discovering you're
| suddenly un-insurable for condition X that you might not even
| have known you could get. Other variations in the space
| include embarrassment/blackmail or aggressive marketing.
|
| 2. Exploitation without "fair" compensation, such as if your
| family has a history of a certain expensive health problem
| and it turns out those genes are also the key to making an
| unrelated Miracle Cure, but none of that makes its way back
| to compensate people for the suffering/cost that enabled the
| benefit to everyone else.
|
| 3. Re-sharing with governments or law-enforcement, bypassing
| other rights/protections you would normally have.
| lend000 wrote:
| 1. Re: insurance buying the data to be used against you.
| This seems like a problem that could be solved by other
| regulatory venues w.r.t. pre-existing conditions in
| insurance.
|
| 2. This is a dramatic overreach of intellectual property. I
| put in no effort to create my genes and certainly should
| not be able to withhold certain beneficial amino acid
| sequences from being used by others simply because I exist.
| Not to mention the fact that the same gene is probably
| present in millions of people. Clearly I am not going to do
| the work to monetize some gene and help save people, so the
| people who do the actual work should be able to profit from
| it (unless you think it's better if people who could
| benefit from it just die). Fair compensation is zero; any
| finder's fee awarded in such an unlikely technical scenario
| would be gratuitous.
|
| 3. Governments already have this as soon as 23-and-me
| exists. Whether or not the data was for sale is irrelevant
| to Uncle Sam.
| gonzo41 wrote:
| 1. They'll still do it anyway. See VW and the diesel
| emissions scandal.
| adastra22 wrote:
| They might nefariously cure some genetic ailment that would
| otherwise shorten your life.
| bossyTeacher wrote:
| 1. they sell to insurance companies, insurance companies
| charge you a premium (obvs the dna profiling would be too
| blatant but it would happen, the money is wayyy too good to
| leave it on the table and any company that doesn't loses in
| the long run other things being equal)
|
| 2. big pharma knows you (where you just means people that are
| likely to be genetically similar to you) are likely to have x
| medical condition in the future, they relay this information
| to a third party, third party spams with you ads telling you
| to get check for x for free if you sign up for drug
| subscription that is highly marked up
|
| I thought of these in 5 minutes. Now I imagine how many
| opportunities could be devised by thousands of highly
| experienced medical sale/marketing folks between now and
| anytime afterwards.
|
| You have to understand, that your dna is like a video record
| of your potential present and your potential future, and just
| like video records are highly valuable, the same happens with
| your dna
| monero-xmr wrote:
| I'm fine with it. I gave them my DNA. I want diseases to be
| cured. They have a great repository of genetic material with
| which to save lives.
| lm28469 wrote:
| > I gave them my DNA. I want diseases to be cured.
|
| These are two independent statements with no connection
| whatsoever.
|
| "I gave up my right to bear arms to stop wars in the world"
| taneq wrote:
| Was this not always the end game?
| solardev wrote:
| I _paid_ them _so that they can do useful things with my
| sample_ , like correlate it with research or do more research
| on their own. I then volunteered to share more of my data in
| their surveys, and collected more samples for them for further
| research. I think it's _fantastic_ that they are sharing this
| with drug companies. In fact, my main question is: What took
| them so long?!
|
| My DNA isn't some terrible secret I have to hide in the dark.
| I'm just one of like 8 billion variants of imperfectly copied
| ape. Maybe paying 23andme to do something useful with it will
| be my only lasting legacy in this world, lol.
|
| It's not that I "didn't see it coming", it's that I hoped this
| would happen from the get-go.
| jacquesm wrote:
| GSK doesn't have your well being as it's goal, it has it's
| own revenue stream as its goal. Without an ethical framework
| around consent for the use of this data the potential for
| abuse is substantial, upsides are optional. They need to make
| that money back somehow.
| solardev wrote:
| If my worthless genomic data contributes to a drug that one
| day helps even one other person, I'm fine with this.
|
| Would I prefer all this data be free and open? Sure.
| Failing that, would I want to hold onto it? No. I'd still
| rather some mega evil pharma have it and be able to develop
| some overpriced medication that may one day be genericized.
| It's not doing me or anyone any good just sitting in my
| body.
|
| Hell, I'll spit for anyone wanting to do research, for
| profit or not.
|
| I think there are very few true "good guys" in the world.
| But if mega evil pharma corp has even a 1% chance of
| accidentally doing some tiny good as a byproduct of their
| evil... that's already more than would've happened if
| 23andme didn't share it with them. It's cool with me if
| they make some money in the process. My DNA isn't some
| creative work that I need royalties on. What nature giveth,
| I spiteth.
| MerelyMortal wrote:
| Just because you value something as worthless, does not
| mean everyone else values it as worthless.
| solardev wrote:
| I'm not demanding anyone else give theirs. I'm just happy
| to give mine.
|
| Different customers of the same company can respond
| differently to their actions. In this case my opinion is
| that this a net good. Others can and will disagree, of
| course!
| jacquesm wrote:
| Are your children and your parents also on board with
| this? If not: did you realize you just contributed half
| of their DNA as well?
| MerelyMortal wrote:
| I feel bad for the children whose parents post about
| their medical conditions on social media, your comment
| reminds me of that travesty.
| solardev wrote:
| Even I agree with this, despite not having kids. Their
| lives aren't mine to monetize or publicize. Let them have
| whatever semblance of a childhood they can have under the
| already too harsh spotlight of modern media, yeesh.
|
| It was bad enough in the 2000s when my mom liked all my
| Facebook posts. Real travesty here.
| solardev wrote:
| No kids and never will (vasectomy). Parents couldn't care
| less. They were intrigued by the ancestry stuff though.
| They're not long of this world anyway and probably won't
| live to see genetic medicines become an everyday reality
| :(
|
| My partner's bigger family also contributed a lot of
| their DNA to this or similar services. I'll have to ask
| her what they think of sharing it with third (fourth?)
| parties. Be an interesting data point at least. I feel
| like the HN crowd holds a lot of uncommon opinions (not
| good or bad, just different from most people I know IRL).
| jacquesm wrote:
| Ok, that makes you a minority in the sense that I think
| that the potential negative fall out from your decision
| is limited enough that you were entirely free to make it.
| But the bulk of the people that sent their family data to
| 23andme isn't that well informed and likely has no idea
| about the potential for abuse of such data.
|
| Maybe it is the 'dark side' in me or maybe it is simply
| seeing so many corporate abuses over a lifetime in IT
| that I can't see beyond the abuse to the possible good.
| The fact that it has Google backing is one major strike
| against it, as is the fact that they were going to
| commercialize the data itself right from the get-go
| whilst giving their paying customers something the
| amounted to expensive infotainment. It's clear that they
| wanted the data, not clear that there would be benefits
| to the participants, the data returned is just too coarse
| for that and akin to doing a lot of screening without
| symptoms, a practice that the medical profession has
| warned against repeatedly.
| solardev wrote:
| I don't disagree with what you're saying (that people
| don't always understand the implications of their casual
| dealings with big evil corps).
|
| But can I offer another perspective, one of potential
| differences in values?
|
| Privacy, for me, isn't a super high concern. Having some
| is nice, but it's never my top consideration. (I know
| this skews against the dominant HN sentiment, and
| Slashdot's too before it. That's okay.)
|
| Science, however, IS huge for me -- even when the science
| is done by sub-optimal orgs like your Big Evil Corp du
| jour. When I learned that Google owned 23andme, my
| reaction wasn't one of horror.
|
| Instead, it was "Oh cool! Maybe they'll actually have the
| resources to correlate this with all their other data on
| me." I then proceeded to sign up for Google Health,
| Google Fit, etc., and made sure to upload my health
| readings to their servers _in the explicit hope that they
| would be able to merge it with 23andme and other data_.
| My dream was that one day they would be able to identify
| genetic markers not just for health and lifestyle stuff
| but also behavioral data, like my YouTube preferences and
| Gmail conservational styles.
|
| Gattaca to me was a utopia, not a dystopia.
|
| I know that's probably not a common viewpoint. But I was
| really excited by the possibilities, and it doesn't
| bother me in the least that Google knows so much about
| me. I just wish they'd do something useful with all of
| it.
|
| FWIW, I just asked my partner about the data sharing. She
| said she's fine with it and would opt-in if given the
| choice. Most of her family too (many were early adopters
| of genetic testing). One individual in particular skews
| conservative and is conspiracy-theory-prone and would
| probably not, though.
|
| I wonder how much of this preference is political or
| personality or similar. Would be interesting to plot
| privacy needs vs the Big 5 personality test, maybe. But
| how would you get participants? Lol.
|
| > It's clear that they wanted the data, not clear that
| there would be benefits to the participants, the data
| returned is just too coarse for that and akin to doing a
| lot of screening without symptoms, a practice that the
| medical profession has warned against repeatedly.
|
| To this point, yes, you're probably right, but these
| things are rarely black and white. It's a false
| dichotomy. They can be harvesting all my data but STILL
| offer a useful service at a good value to me. And -- more
| importantly -- nobody else stepped up to offer the same
| thing with a better business model. Whether it's 23andme
| or YouTube, it's not necessarily the case that all their
| customers have their blindfolds on. Some of us are just
| OK with the tradeoffs and buy into it willingly. The
| medical profession isn't always able to meet consumer
| desires, to say the least. And even if 23andme didn't do
| it perfectly... at least they did it. If the medical
| profession or the government wants to offer something
| similar, I'd still be interested... they just haven't
| yet, AFAIK.
| bossyTeacher wrote:
| > My dream was that one day they would be able to
| identify genetic markers not just for health and
| lifestyle stuff but also behavioral data, like my YouTube
| preferences and Gmail conservational styles
|
| You know that's unlikely to happen. What's more likely is
| you helping that in the future people similar to you will
| be paying more stuff because of their genes or being
| profiled against because of their genes. Yes, there are
| laws against just as they are against discrimination on
| the basis of protected classes but the discrimination is
| still happening. And with DNA info, you can do it better
| and will be harder to detect. At the end of the day,
| other things being equal, any of those companies using
| dna to assess candidates will be more accurate than those
| than don't and should effectively dominate the market in
| a red queen race. Surely, it won't happen now (dna
| sequencing is way too expensive now) but when it happens,
| it will be hard to stop.
| solardev wrote:
| I think this is inevitable too, but... maybe politically
| incorrectly... maybe we should acknowledge it and roll
| with it, and help people with worse genes however we can,
| but encourage genetic modification for future
| generations?
|
| I don't think this idea of "gene blindness" can really
| work, long term. We're lying ourselves when we say all
| people are created equal. They very much are not. That's
| the whole point of genetics.
|
| But we can still say "but they still deserve respect,
| compassion, and equal treatment." That applies whether
| theu are disadvantaged due to race (itself genetic,
| though more plainly obvious), hormonal (sex and some
| birth defects), upbringing, culture, whatever.
|
| I'm totally for opening up the genome for cross-
| examination and all the hard social questions that will
| necessarily come wit it, rather than avoiding the topic
| and pretending like it's not a thing.
|
| Social norms will just change over time. Better
| understanding and usage of our genes can actually advance
| the species (and hopefully societies with it).
| nonrandomstring wrote:
| > It's not doing me or anyone any good just sitting in my
| body.
|
| That's funny dude!
|
| Not laughing _at_ you, but you just nailed self-
| objectification and reification better than a whole
| chapter of social scince jibberjabber or pschology
| babble.
| solardev wrote:
| Makes sense! I'm also a "yeah they can poke and prod my
| body and harvest my organs, not like I have any use for
| them after I'm dead" kinda donor.
|
| At least it's consistently materialist, eh? (as opposed
| to spiritual dualism, etc.)
|
| This is probably not a controversial stance here on HN,
| but IMO humans are essentially wet, mostly hairless sacks
| of proteins and dreams. It's kinda cool that despite
| that, we are motile and can pass for sentient (some days
| of the week).
| nonrandomstring wrote:
| Ugly Bag of Mostly Water! :)
|
| (A Trek TOS thing I think)
| flandish wrote:
| I wish the data would be combined with things like
| Vanderbilt's BioVU databanks, etc, for actual translational
| research and not for swift for profit research.
|
| This is just another version of "socialized research
| privatized profit."
| fsckboy wrote:
| > _GSK doesn 't have your well being as it's goal, it has
| it's own revenue stream as its goal. Without an ethical
| framework around consent for the use of this data the
| potential for abuse is substantial_
|
| I don't like that you seem to be trying to drive a wedge
| between revenue streams and ethical goods. Measuring how
| much money societies spend on things is the best measure we
| have of how much societies value those things.
|
| Companies (and people, including employees and customers of
| companies) do all sorts of horrible, unethical things. But
| profit (surplus) is a good thing overall, as is symmetric
| information and competition.
| Arainach wrote:
| >My DNA isn't some terrible secret I have to hide in the
| dark.
|
| .....please get back to us on how that opinion ages once your
| insurance companies get ahold of the data.
| zo1 wrote:
| Not OP, and I agree that research needs to get access to
| DNA for medicinal, personalization and drug-development
| research purposes. What I'm more worried about is this sort
| of data being used to train a neural network that maps
| genes to physical traits, which would be both a goldmine
| and Pandora's box.
|
| If I could compare it to something recent, it's the whole
| Content -> LLM -> Content loop that was created and we're
| all upset over now to various degrees. Our DNA is the
| content and up until now has been an opaque black-box with
| only minor views into it for very specific genetic
| diseases. Once they open up the box that allows them to get
| to things like IQ, height, muscle-density, resistance to
| diseases, fertility, etc, then the human race is in for a
| wild down-hill ride.
| xnorswap wrote:
| Once that happens, it won't be by the backdoor.
|
| Insurance companies will offer a "DNA discount" and ask for
| DNA directly, and simply charge more to anyone who refuses,
| and then grade the amount of "discount" based on the risk
| profile back from the DNA sample.
|
| If you hold out and refuse, you'll simply get lumped in
| with the riskiest.
|
| People love a "discount".
| sergers wrote:
| My household mortgage provider, TD Bank Canada, offered
| me critical illness/death "insurance" for me and my
| spouse.
|
| As we were insuring over a million in the mortgage/loc, I
| guess they have diff requirements.
|
| They sent over their own funded nurse, who collected
| vitals and blood samples which we signed off them running
| any number of tests.
|
| I should have checked if any clause for DNA. But that's
| not needed... Insurance is already all over you now.
|
| Mostly in past was just a quick questionnaire. Then I was
| use to be sent to Dr for physical.
|
| Now they contracting their own nurses and labs.
|
| They probably already collecting your dna
| panta wrote:
| taken to the extreme, if complete data availability
| allowed to predict the future with enough precision, then
| everyone would pay an insurance premium corresponding to
| their insured negative events. In practice insurances
| wouldn't have any reason to exist. The foundational
| premise of the insurance concept is that risk is spread
| across every participant in an equal manner.
| clbrmbr wrote:
| Really important comment!
|
| Is having a bad recessive a "pre-existing condition"? Or
| do genotypes form already legally protected classes?
|
| Clearly we need good lawyers here, or careful regulation,
| or public medical insurance.
|
| I hope it doesn't go the way of car insurance.
| WarOnPrivacy wrote:
| > The foundational premise of the insurance concept is
| that risk is spread across every participant in an equal
| manner.
|
| Applying this broad principle to auto insurance, it isn't
| doing well. Auto ins is ~mandated. Participants are
| forced to pay for risk pools they aren't part of.
|
| ex: Car repair costs are skyrocketing. Premiums are also
| skyrocketing, including for people who don't carry
| collision.
| nerdix wrote:
| Why wouldn't insurance have a reason to exist? Even the
| healthiest people need medical insurance because anyone
| can experience accidental injury requiring
| hospitalization and/or on going medical care.
| panta wrote:
| Then only insurance for actual accidents would make
| sense, but even then insurance companies could start
| analyzing more meticulously the individual probabilities
| of having accidents: do you have an active lifestyle? you
| pay a premium; do you practice sports? you pay a premium;
| travel more than the average human? pay a premium; are
| you getting older? insurance rate grows exponentially;
| already had an accident? sorry, you no longer a desirable
| customer.
| everforward wrote:
| This is presuming perfect knowledge; it's a thought
| experiment. In this hypothetical world, your insurance
| company does know that in 13 months you're going to get
| in a car accident that flings a 1.27mm shard of glass
| into your eye, that it's going to take 27 minutes to
| complete the surgery that fixes it, that you'll have an
| infection after that and the first 2 antibiotics won't
| work but the third one will.
|
| It's basically just pointing out that perfect knowledge
| makes risk 0, and that insurance doesn't make sense in a
| world with no risk. At that point the question is
| basically just whether you distribute medical costs
| evenly across everyone or let there be winners and losers
| on those costs.
| trimethylpurine wrote:
| In the US at least, according to some quick web
| searching, discounts must apply to the entire pool of
| insured. (For medical insurance specifically.)
| globular-toast wrote:
| I worked in insurance and they all seem intent on tailoring
| everyone's insurance policies based on any minutiae they
| can dig up on them. For example they found out for life
| insurance that people who live in greener areas live
| longer, so they were trying to obtain geographical data for
| "greenness".
|
| I asked them what the end game is. What happens when
| everyone's insurance policy is exactly tailored to them?
| What is the point of insurance then? If they get it too
| right they put themselves out of business. They didn't have
| a good answer.
| charcircuit wrote:
| >What is the point of insurance then?
|
| Protection from unlikely events.
|
| >If they get it too right they put themselves out of
| business.
|
| No, they don't. Getting it too right just means they are
| able to more effectively compete on pricing since they
| know the lowest price they can offer while still making
| profit.
| sa-code wrote:
| The point you missed is that when insurance is hyper
| tailored to specific people, you are basically paying for
| your own healthcare and can cut out the middle man
| charcircuit wrote:
| That is assuming all health related costs can be
| predicted 100% correctly. If there is a 1/3rd chance to
| incur a cost then insurance lets you get away with only
| paying 1/3rd of the cost.
| adastra22 wrote:
| Yes, the is the assumption in this hypothetical.
| charcircuit wrote:
| In that hypothetical in the best case the insurance
| company will never lose money by charging someone less
| than what they will have paid out to them and they will
| be able to sell this service to other companies, in the
| worst case they become essentially a bank.
| soco wrote:
| Uh, no. Insurance is paying for unlikely events, as it
| was said above. Greener area or not, you can still get
| run over by a car, event for which you definitely didn't
| pay. Or you house struck by lightning, or any such
| insurance cases might arise. The green area only affects
| the probability of such events, thus the tailoring.
| globular-toast wrote:
| But my point is by hyper-optimising for individuals it
| will at some point cross a line where it's not really
| insurance as you understand it any more. The unlikely
| event is that the insurance company gets it wrong, for
| example your house floods in an area that was not
| predicted to flood for millennia. As the insurance
| company gets better, the chance of an unlikely event gets
| smaller. How small can that chance get before you decide
| to just take the risk yourself?
| bossyTeacher wrote:
| insurance <> healthcare
|
| the point of insurance is to cover for unlikely events
| not expected events (like you needing increase healthcare
| support as you age)
| rurp wrote:
| You don't think that insurance companies will charge a
| hefty premium for sitting in the middle of that? That's a
| pretty classic middle man scenario.
| petesergeant wrote:
| > If they get it too right they put themselves out of
| business
|
| What? How is it you think insurance companies make money
| exactly? And why would getting better at predicting risk
| stop them doing that?
| globular-toast wrote:
| Insurance makes money by ensuring their income (premiums)
| is greater than their outgoing (payouts).
|
| The value of insurance (and why we pay for their profits)
| is in spreading risk across populations. They already
| target particular demographics (when the law allows them
| to), but I'm talking about targeting _individuals_.
|
| If the insurance company can predict exactly how much
| they will be paying out to you in the next 10 years, say,
| then they just become a glorified savings account with a
| cost attached (their profit). The value is then
| essentially telling you how much you need to save. Data
| companies like 23&Me could then offer this without
| bothering with the savings account part.
|
| My feeling is people won't accept this and will want
| actual insurance policies that actually spread risk
| across populations because people don't want to be told
| "you need to save twice as much as your neighbour because
| of your cancer in 15 years time".
| nerdix wrote:
| Except accidents happen.
|
| Unless they have a crystal ball and can tell you whether
| or not you will be involved in an accident leading to
| serious injury (and the nature of those injuries) then
| you still need health insurance.
|
| I know a guy who was robbed and shot. Had to have surgery
| and spent a few weeks in the hospital.
|
| I have a neighbor that was jogging, tripped over a bump
| in the sidewalk and broke his arm. Few weeks in a cast.
|
| I know plenty of blue collar workers who had on the job
| injuries that required medical treatment.
|
| Your DNA isn't going to help with that. And in America, a
| simple 4 hour visit to the ER can result in a multi-
| thousand dollar bill. And if you're unfortunate enough to
| need a surgery and a multi-week stay then we're talking 5
| figures minimum.
| K0balt wrote:
| As insurance risk estimation errors approach zero, the
| value of having insurance instead of just a medical
| savings account approaches zero. Rates for higher risk
| individuals will become prohibitively high and those
| people will have no choice but to be uninsured. Insurance
| companies would be essentially only covering black swan
| events, as individual premiums would match individual
| health costs with high fidelity.
|
| As a result the incentive to get comprehensive health
| insurance rather than just disaster insurance would
| plummet, as an MSA would be more cost effective and you
| also get to take advantage of better than predicted
| health outcomes in the form of interest earned and at EOL
| a potential inheritance gift.
|
| Sounds great, except you jhave to understand that this
| would mean that society would somehow need to deal with
| the burden of the least healthy, who would be very
| unlikely to purchase, or be able to afford, insurance
| under this scheme. It's like trying to charge up front
| for building roads. You just end up with no roads.
| Socialism (or in the case of insurance,capital funded
| socialism) is extremely beneficial to society in certain
| specific verticals.
| rurp wrote:
| I expect that marketing, regulation, and accidents will
| keep insurance companies around indefinitely. The upside
| of near perfect information seems great, for the
| insurance companies. They can ensure that the premiums
| they charge are higher than the expected payout for 100%
| of their customers. That won't be so good for the folks
| who need insurance the most though.
| adastra22 wrote:
| That was explicitly made illegal under federal law for
| exactly this reason.
| solumunus wrote:
| More efficiently priced insurance would be a good thing. A
| lot of people seem to be confused about what insurance is.
| denton-scratch wrote:
| "Efficiently priced insurance": do you mean so the
| insurance company can set your premiums based on a more-
| accurate estimate of your risks?
|
| The whole point of insurance is (or was) pooled risk. The
| more the insurance company knows about my risk (even
| risks I don't know about), the less point there is in me
| buying insurance; I may as well just put my premiums into
| a private sinking fund.
| SantalBlush wrote:
| Exactly. If an insurance company has perfect knowledge of
| each individual's risk and charges accordingly, it ceases
| to be insurance.
| adhesive_wombat wrote:
| People in the UK should take note of this thread: this is
| what the private health industry dearly, dearly wants for
| you too. Treasure what you have while you still have it.
| luma wrote:
| This sort of thing has been illegal in the US since 2008.
| You're talking hypotheticals that have already been
| addressed by legislation.
| varjag wrote:
| Man were the old times amazing. Mandatory seatbelts,
| smoking bans and this. Things that would be impossible to
| legislate in 2020s.
| salawat wrote:
| Note: Compliance departments in insurance companies are
| basically intended to facilitate by rote presentations of
| trainings to check off that list item as a required
| business operation.
|
| _Actual_ teeth to bite back or remidiate non-compliant
| activity of a company that the executives have decided to
| file under the "fuck it, nobody's looking" risk heading
| are basically not there.
|
| Point being, just because the law is on the books doesn't
| mean it isn't being elided at every opportunity. You have
| been warned.
| delfinom wrote:
| The Genetic Information Nondiscrimination Act (GINA) of
| 2008 already forbids them from doing anything.
|
| >GINA prohibits health insurers from discrimination based
| on the genetic information of enrollees. Specifically,
| health insurers may not use genetic information to
| determine if someone is eligible for insurance or to make
| coverage, underwriting or premium-setting decisions.
| solardev wrote:
| The American insurance model is stupid and needs to go
| away, regardless of my DNA.
| slg wrote:
| >My DNA isn't some terrible secret I have to hide in the
| dark.
|
| Considering we leave our DNA basically everywhere we spend
| more than a few moments, it seems like a rather impossible
| task to keep it secret anyway. I mean if we are fearing some
| dystopian world in which people are discriminated against
| based on their DNA profiles, why would that only apply to
| people who volunteered their DNA?
| notahacker wrote:
| Yeah, this. If an entity really wants to screen your DNA,
| there are easier routes than figuring out how to
| deanonymise you from a collection of thousands of profiles
| with basic demographic info they've just bought or paying
| enough to convince the entity with the very profitable
| lawful line in selling anonymised data to break the law for
| them.
| RHSeeger wrote:
| This is a matter of scale, though. There is a big
| difference between
|
| - Someone wants to know if your DNA matches the killer's...
| so they get a hold of your DNA and test it
|
| - The companies you interact with all have easy access to
| everyone's DNA and can make decisions based on things like
| who is the most likely to get addicted to gambling.
|
| We've been fighting tooth and nail to prevent things like
| "people with hispanic surnames have a harder time getting a
| loan for a house". It's illegal to do so, and we still have
| problems with it. Now talking about adding in all kinds of
| "this person is more likely to have this condition" into
| those calculations. And they WILL be included if they're
| available; even if it's not obvious.
| slg wrote:
| >- The companies you interact with all have easy access
| to everyone's DNA and can make decisions based on things
| like who is the most likely to get addicted to gambling.
|
| Yes, that is exactly my point. In these hypothetical
| dystopias, this is going to apply to "everyone's DNA" and
| not just some subset of people. In order to fear
| volunteering your DNA, you need to fear a very specific
| level of dystopia in which this illegal DNA
| discriminating becomes common, but companies don't do
| anything illegal to acquire the DNA data.
|
| It is like imagining that people could have escaped Nazi
| persecution if they just never admitted they were Jewish.
| Dystopias don't work like that. The evil people aren't
| going to give you a choice.
|
| If we are going to live in a dystopia, it likely isn't
| going to be the Goldilocks dystopia in which just the
| right amount of evilness exists for this to be an issue.
| lm28469 wrote:
| > Considering we leave our DNA basically everywhere we
| spend more than a few moments, it seems like a rather
| impossible task to keep it secret anyway.
|
| This is the "encryption should be illegal because I have
| nothing to hide" level of argumentation.
| slg wrote:
| No it isn't. I never said anything about making hiding
| DNA illegal, just that it is impractical. If you want to
| map it onto cryptography, I'm making the rubber-hose
| cryptanalysis argument[1][2]. People are worried about
| some evil entity going through proper channels for their
| evilness when there are more blunt and direct ways to get
| what they want.
|
| [1] - https://xkcd.com/538/
|
| [2] - https://en.wikipedia.org/wiki/Rubber-
| hose_cryptanalysis
| mrweasel wrote:
| > My DNA isn't some terrible secret I have to hide in the
| dark.
|
| You DNA isn't as unique as you think it is, or it is, but
| specific parts aren't. The way law enforcement uses DNA tests
| only compares a small part of your DNA sequence. People have
| already been wrongly convicted based on DNA "evidence". If
| 23andMe is opening up access to their database of customers
| there's a very real chance for people to be misidentified and
| potentially implicated in crimes they didn't commit, again
| this has already happened using existing DNA databases.
|
| So yes, you absolutely need to keep your DNA in the dark and
| only provide it when it's beneficial to you and when you can
| trust that it's kept safe or destroyed. Providing DNA to a
| company that might sell it in the future was always a stupid
| idea. 23andMe might be completely safe in what they are
| doing, but what stops them from selling your data to say
| Palantir in the future?
| xyproto wrote:
| If enough relatives shares their DNA, then your DNA is not
| in the dark anymore either. Over time, I think protecting
| ones DNA is an uphill battle.
| mrweasel wrote:
| > I think protecting ones DNA is an uphill battle.
|
| Sure, I'd agree with you on that, but that doesn't mean
| that you shouldn't try and just give up. Ideally it
| should matter and there is a lot of good and positive
| uses, but still little protection against misuse.
| krisoft wrote:
| > there's a very real chance for people to be misidentified
| and potentially implicated in crimes they didn't commit,
| again this has already happened using existing DNA
| databases.
|
| The solution there is more light, not more obscuration. You
| are right, the more samples you screen from the more false
| positives you will get. The solution is to corraborate the
| matches with other information, and being transparent about
| the levels of confidence.
| bossyTeacher wrote:
| you know that's not gonna happen. Customers want
| certainty
| solardev wrote:
| Seems like growing pains for that methodology. More data
| can inform our confidence intervals.
|
| Someday soon, it'll be as ubiquitous as fingerprints,
| facial recognition, iris scans, etc. It'll be up to our
| legislatures and law enforcement to keep pace (it does take
| decades, sadly).
|
| I don't think pretending something isn't there has ever
| worked. Only when it's so open and transparent and
| undeniable does it force through change.
| lm28469 wrote:
| > My DNA isn't some terrible secret I have to hide in the
| dark.
|
| Like your faith before 1930s Germany ?
|
| What will you do when they pump your health insurance rate
| 300% because you have a "bad" DNA ?
| tgv wrote:
| > Who ever did not see this one coming
|
| Were also the people who have very little understanding of
| biology and/or privacy. I'd say that covers a good 90% of the
| population.
| seydor wrote:
| I m glad they use the data, and have volunteered my data to
| other services as well. This was actually my reasoning for
| using these services from the beginning. It's sad that laws
| prevent them from giving us health reports.
|
| DNA data is not worth protecting imho, and the benefits from
| their public use are very big. The DNA degrees-of-separation
| between any two humans is less than 3, so we are all traceable
| anyway already, and people should be aware of that. But the
| science/health benefits that can come out of this remain
| enormous.
| DecayingOrganic wrote:
| Just because the benefits of sharing DNA data appear large,
| doesn't mean we should take potential drawbacks lightly.
| Imagine this: a future where a specific gene is linked to
| hard work. Companies start screening job applicants based
| purely on their genetic makeup -- if you don't have the gene,
| you don't get the job. Or even more worryingly, imagine the
| government starts surveillance on a group of people with a
| particular gene, claiming they're more likely to commit a
| certain crime based on some obscure study. It would lead to
| moral and ethical havoc. DNA data might not seem worth
| protecting right now, but unchecked, the misuse could be
| catastrophic.
| seydor wrote:
| We already did these things, we discriminated against
| women, racial minorities, skin colors, and even more,
| religious minorities etc. We already have laws against
| these things, we never asked people to hide the color of
| their skin.
|
| What's problematic right now is that only law enforcment
| has unrestricted access to the dna data. I actually want
| such data to be open source.
| RHSeeger wrote:
| > we never asked people to hide the color of their skin
|
| We have a bunch of regulations around "you can't even ask
| the person about that", specifically because companies
| cannot be trusted not to discriminate based on it.
| AndrewThrowaway wrote:
| Medical insurance - oh you have cancer/hear attack/etc
| gene. You premiums skyrocket.
|
| Job opportunities - oh so sorry you have bipolar gene...
|
| Dictator governments - oh your genes are shit so you are
| not allowed to have kids.
| seydor wrote:
| sue the first two, get $$$. This is textbook
| discrimination
|
| i avoid dictator governments , which do it anyway
| already, just based on phenotype
| squigz wrote:
| Don't wanna live in a dictatorship? Just avoid it,
| simple!
| lopis wrote:
| > sue the first two, get $$$. This is textbook
| discrimination
|
| Ah but they did no wrong! They just licensed the AI du
| jur that functions pretty much like a black box, but just
| so happens to feed on multiple sources of data from
| dozens of data brokers. One of those brokers aggregates
| data from other brokers, including DNA data from DNA
| services.
|
| Meanwhile, all the recruiter saw was "37% match" before
| reading your resume and moved on.
| ekianjo wrote:
| > i avoid dictator governments
|
| If you are born in one you cannot really escape thats
| kind of a big design feature you know
| blunder_chess wrote:
| In the United States, my understanding is that your
| medical & employment discrimination scenarios are already
| illegal due to the Genetic Information Nondiscrimination
| Act of 2008.
|
| https://en.wikipedia.org/wiki/Genetic_Information_Nondisc
| rim...
| lrvick wrote:
| Because large corporations have never broken laws before?
|
| Or bribed politicians to change them?
| eliasmacpherson wrote:
| stealing is illegal, so I never lock my front door.
| HumblyTossed wrote:
| Keeps you from getting a broken window, so that's
| probably not a bad idea.
|
| If they want in, a locked door isn't stopping them.
| hef19898 wrote:
| The locked door makes all the difference for your
| insurance claim so.
| genewitch wrote:
| In Louisiana, if you leave your car unlocked and someone
| takes it, it isn't GTA, its unauthorized use of a
| movable.
| macNchz wrote:
| > Or bribed politicians to change them?
|
| There was already an effort to weaken this law in 2017.
| It didn't pass, but if corporations are lobbying for
| loopholes it would be entirely unsurprising to see some
| slip into future legislation. https://www.vox.com/policy-
| and-politics/2017/3/13/14907250/h...
| Chris2048 wrote:
| Any law could be subverted via these justifications. "Why
| should I register my gun when the government itself
| breaks laws, and its politicians corrupted by bribes!"
| bonton89 wrote:
| That just means they'll receive a small fine 15 years
| after it happens and the damage is already done.
| StableAlkyne wrote:
| They'll get sued immediately by everyone who is denied a
| job following a genetic screen.
|
| There's a reason companies who require a physical or
| medical history (usually done to find pre existing
| conditions to protect against future workman's comp
| claims) do it _after_ the job offer has been extended (it
| 's risky to rescind an offer for no reason by the way) -
| if they did it before, every applicant with a disability
| (and their pro-bono lawyers taking a slam dunk case) who
| did not get the job would sue.
| leoedin wrote:
| I don't think the first two are necessary a big deal in a
| western liberal democracy. We already have fairly strict
| legislation around data protection and selective hiring
| based on certain characteristics (like ethnicity - which
| is really just a much less accurate form of genetic
| classification).
|
| There might be a period where we haven't legislated
| against that sort of stuff. But once we do there's going
| to be a pretty big paper trail if a potential employer or
| insurance provider is searching a genetic database for
| you.
|
| Dictators? Yes, they could do that. But they could
| already send you to the gulag because of how you look,
| who you're friends with, what you said in the pub etc.
| It's another tool in their arsenal maybe, but it's not
| like they don't have a lot anyway.
| concordDance wrote:
| > Medical insurance - oh you have cancer/hear attack/etc
| gene. You premiums skyrocket.
|
| This is how insurance is supposed to work. It should
| reflect your actual risk levels.
|
| Now, if what you _actually_ want is socialised healthcare
| then implement that, trying to backdoor it via insurance
| gives you the worst of both worlds.
|
| > Job opportunities - oh so sorry you have bipolar
| gene...
|
| Then the company that looks at actual behavior rather
| than genes hires people slightly under market and makes
| bank. Then other companies start copying them.
| ekianjo wrote:
| > This is how insurance is supposed to work. It should
| reflect your actual risk levels.
|
| Of course not. This is how perverse insurance works.
| Proper insurance systems work by pooling risks into large
| groups so that the few who are unlucky to have problems
| at a given point in time are covered.
|
| The whole custom risk factor at the individual level is
| pure exploitation and a travesty of what insurance
| systems used to stand for.
| _heimdall wrote:
| I'm not sure that I follow. Whats wrong with insurance
| companies factoring in DNA markers to put people at risk
| of cancer or heart attack in a higher risk pool?
|
| That's not a custom risk factor at the individual level.
| Its just using data they believe indicates risk to decide
| what larger pool the person gets put into.
| polygamous_bat wrote:
| You don't even need DNA data do to that, just use race
| statistics to increase or decrease your premium! Or do
| you think that would be illegal?
| concordDance wrote:
| Companies use many forms of data to change premiums, many
| you don't have much control over (e.g. what area of the
| country you live in). Why is that wrong?
| polygamous_bat wrote:
| Because you can possibly change your address but not your
| race?
| concordDance wrote:
| You can change it in theory but if that's where your
| family, job, kids school, etc are? Then realistically you
| don't have a choice.
| jjgreen wrote:
| Combine that with race extracted from x-rays and AI ...
| https://www.nibib.nih.gov/news-events/newsroom/study-
| finds-a...
| _heimdall wrote:
| I don't know insurance law well enough to say if that's
| legally discrimination.
|
| Now if you're asking me personally, I dislike the
| insurance industry in general. Insurance shouldn't be
| required, legally or otherwise. At that point insurance
| companies can use whatever data they want to price
| policies, as long as the terms are clear customers would
| actually have a choice whether they want insurance or
| not.
| dorfsmay wrote:
| So car insurances shouldn't account for past driving
| experience?
|
| Are you talking private insurance or socialised risk
| mitigation?
|
| The goal of private companies is to make profits. There
| is space and use cases for both models. Of course large
| private companies put efforts into making people believe
| that's not the case.
| polygamous_bat wrote:
| > So car insurances shouldn't account for past driving
| experience?
|
| Do you understand why discriminating job applicants based
| on race/sex is illegal but not based on GPA?
|
| One is something you were born with. Another is something
| that you did.
| lotsofpulp wrote:
| All the evidence I have seen points to "what you were
| born with", including the parent(s), family,
| neighborhood, etc to be very heavily correlated with GPA.
| genewitch wrote:
| Right, but for some reason it lets claim the moral high-
| ground. Right now individual taxes account for more
| revenue than all companies combined, perhaps barring
| payroll taxes.
|
| Socialize medicine, please. A million dollars for a
| cancer treatment is insanity, when nearly 50% of the US
| population will get cancer at some point in their lives.
| dorfsmay wrote:
| Should we private insurance on "something you're born
| with" based risks?
| lacrimacida wrote:
| Don't compare car insurance with health insurance. Past
| driving incidents are perfectly okay to take into
| consideration for car insurance, some people need
| incentives to drive safely. But genetics is nothing
| people can change, it's fixed.
| Chris2048 wrote:
| This all assumes two perfectly definable categories of
| characteristic - fixed, unchangeable category, and
| incentiv-isable behaviour / changable category.
|
| It's not always that clear e.g. genetic disposition to
| alcoholism is linked to actual alcoholism and related
| behaviours.
| dorfsmay wrote:
| I agree, and that's my point. Should we have private
| insurances for genetic based risks?
|
| Is there a point of private health insurance?
| bugglebeetle wrote:
| No.
| lostlogin wrote:
| > Of course not. This is how perverse insurance works.
| Proper insurance systems work by pooling risks into large
| groups so that the few who are unlucky to have problems
| at a given point in time are covered.
|
| Have you just described socialised healthcare?
| Jefff8 wrote:
| No, that isn't exactly how insurance works, and it would
| be almost pointless for individuals if it did work that
| way.
|
| Instead, it works by bucketing risk. In the simplest
| form, everyone is in one bucket, ignoring individual
| risk. That means that all other things being equal (e.g.
| size and value of your house), despite you have low risk
| of your house flooding, you would be paying exactly the
| same premium as the person who who has very high risk
| because their house is built on a flood plain.
|
| Of course people paying more for their risk than it
| warrants may see that as unfair - so insurers use more
| buckets - e.g. bucketing high, medium and low risks.
|
| But there's a delicate balance here - for instance,
| insurers may just decide not to insure the high-risk
| category. Or even if they do, the premiums may be
| unaffordable or the insurance benefits substantially
| restricted. And the natural extension of categorizing
| like this is to put an individual in a category by
| themselves - and then to limit payout. Essentially making
| the insurance not any better than a savings account, and
| probably worse if you don't claim at the beginning of the
| policy, before there's a large pot in the savings
| account.
|
| From the point of view of perfect capitalists, the
| insurers would like to insure people with negligible
| risk, for high premiums, for low benefits - to make the
| most profit. From a social-good point of view, we would
| like insurers to cover risk that people _cannot control_
| (e.g. genetic risk) for reasonable premiums and good
| benefits. Categorizing lives somewhere between these two
| - a kind of necessary un /fairness.
| concordDance wrote:
| > From a social-good point of view, we would like
| insurers to cover risk that people cannot control (e.g.
| genetic risk) for reasonable premiums and good benefits.
|
| You're using the wrong tool for the job there, if you
| want people to be supported regardless of their actual
| risk levels then you should get socialised medicine
| rather than artificially restricting what factors
| insurance companies can take into account (and there will
| be plenty of information leakage from due to other
| factors they are allowed to consider correlating with the
| banned ones).
| evandijk70 wrote:
| In the Netherlands insurance is provided by for-profit
| insurance companies. However, there are very strict rules
| - they are not allowed to refuse any applicant based on
| any medical reasons (including preexisting conditions),
| there is a list of treatments they have to cover, there
| are rules for the minimum/maximum deductible, etc.
|
| I would not say that this is the 'worst of both worlds'.
| I actually think it has the best of both worlds, - namely
| coverage for everyone that needs it (benefit of social
| healthcare) and competition between insurance companies
| on price, convencience/reliability of apps, service, etc.
| Chris2048 wrote:
| > Medical insurance - oh you have cancer/hear attack/etc
| gene. You premiums skyrocket.
|
| Is it assumed that premiums will rise? If you get a
| package of, say, pension plan your lower life expectancy
| might lower the premium?
|
| I think this is why certain motorbike cover is actually
| lower..
| funcDropShadow wrote:
| > This is how insurance is supposed to work. It should
| reflect your actual risk levels.
|
| This assumes the relation correlation between genes and
| adverse health outcomes are actually known. By definition
| that ignores personal behavior and epigenetics.
|
| If an insurance becomes to specific to the individuals it
| stops spreading the risk.
| lotsofpulp wrote:
| In the US, it has been 13 years since the PPACA
| restricted premium pricing to only a handful of factors:
|
| https://www.healthcare.gov/how-plans-set-your-premiums
|
| >Under the health care law, insurance companies can
| account for only 5 things when setting premiums.
|
| >Age: Premiums can be up to 3 times higher for older
| people than for younger ones.
|
| >Location: Where you live has a big effect on your
| premiums. Differences in competition, state and local
| rules, and cost of living account for this.
|
| >Tobacco use: Insurers can charge tobacco users up to 50%
| more than those who don't use tobacco.
|
| >Individual vs. family enrollment: Insurers can charge
| more for a plan that also covers a spouse and/or
| dependents.
|
| >Plan category: There are five plan categories - Bronze,
| Silver, Gold, Platinum, and Catastrophic. The categories
| are based on how you and the plan share costs. Bronze
| plans usually have lower monthly premiums and higher out-
| of-pocket costs when you get care. Platinum plans usually
| have the highest premiums and lowest out-of-pocket costs.
| bugglebeetle wrote:
| The age one is completely insane considering the amount
| of unchecked age discrimination that American employers
| engage in. We decided to fire Bob because he's 51 and
| it's cheaper to employ a 27 year old. Oh Bob, sorry, BTW
| your market place plan is now also $1500 a month.
| lotsofpulp wrote:
| Bob, however, did not have to pay for older people's
| healthcare during the 1990s and 2000s.
|
| Also, as an fyi, New York and Vermont do not allow age as
| a factor in pricing, and Massachusetts restricts the age
| rating factor to 2 instead of 3.
| bugglebeetle wrote:
| Everyone pays for everyone else's healthcare, whether it
| be insurance pools, Medicaid, CHIPS, Medicare, etc. In
| America, we just do it in an especially dumb, cruel, and
| expensive way because it makes some assholes a lot of
| money.
| lotsofpulp wrote:
| We do it that way so "we" can have lower taxes.
|
| We is in quotes because various demographics/political
| tribes want to pass the hot potato.
|
| The beauty of the health insurance system is it allows
| you to deliver differing qualities of healthcare to
| different voter groups.
|
| For example, high voter participation groups like old
| people can get Medicare that pays providers more and
| hence more providers are available. And Medicaid for poor
| people on the other end that pays much less and has
| stricter rules on prior authorizations. And you can give
| Senators healthcare that pays providers more than other
| federal employees, and so on and so forth.
|
| I actually find it impressive in some sense.
| bugglebeetle wrote:
| No, we do it that way because both political parties are
| bought and sold by the assholes who run insurance
| companies. They use this corruption to impose a private
| tax on everyone. No one in the US is saving money. We
| spend more than most wealthy country for worse outcomes.
| lotsofpulp wrote:
| The insurance companies are not that powerful.
| Pharmaceutical companies are far more profitable, as are
| healthcare software, other tech, doctor groups, hospital
| groups, etc. You may want to look into liability laws and
| tort reform for other big reasons for why healthcare in
| the US costs a lot.
| bugglebeetle wrote:
| Do you work in the industry or something? Yes, all of for
| profit healthcare is a monstrosity that should be
| abolished. Everyone I've ever met knows the first part of
| that and it does not excuse how awful health insurance
| companies are or all the terrible things they've done,
| both past and present. Tort reform has been tried on the
| state level and it has no impact. It's just a canard
| trotted out by those who are trying to keep the human
| suffering money pump pumping.
| lotsofpulp wrote:
| No, I am just looking at the numbers. Typically,
| businesses with a lot of power have high profit margins
| (who wouldn't want to earn more money?).
| bugglebeetle wrote:
| If I had to chose between making more money off screwing
| over an unemployed middle aged person seeking medical
| treatment or less money not doing that, I would choose
| the latter. As would most people, because they're not
| depraved.
| paws wrote:
| As a generally healthy person it's very disappointing
| that catastrophic plans are only available for under 30s.
| [0] For me it makes the most financial sense to pay out
| of pocket for incidentals/annuals, but be covered for
| catastrophes e.g. get hit by a bus and wake up in a
| hospital.
|
| What magical event happens to people at age 30 that led
| the legislators to ban catastrophic? Would love to see
| the actuarial data on that. I have no knowledge/evidence
| of the reasoning but to me it definitely smells like
| lobbying.
|
| [0] https://www.healthcare.gov/choose-a-
| plan/catastrophic-health...
| lotsofpulp wrote:
| I imagine this was a political compromise to let
| politicians advertise the availability of low cost
| insurance plans for low earners like young people in jobs
| without health insurance so they were not hit with the
| tax penalty that used to exist for not having health
| insurance.
|
| Over 30 is likelier to be making more money and in jobs
| that do subsidize health insurance so they are likelier
| to buy it. And since the whole scheme is actually a
| mechanism to tax, you cannot let everyone opt out of the
| tax.
| tossawayone23 wrote:
| Life insurance doesnt apply to obamacare mecs.
| lotsofpulp wrote:
| The comment I replied to specific medical insurance.
|
| When governments restrict insurers underwriting criteria,
| they are providing a subsidy from one subset of the
| population to another. I think those are best accounted
| for as taxes and government benefits.
| everybodyknows wrote:
| >>Tobacco use: Insurers can charge tobacco users up to
| 50% more than those who don't use tobacco.
|
| Wondering what fraction of smokers know that, and are
| lying to their doctors about it. Inappropriate testing or
| treatment being a possible result.
| xxpor wrote:
| It's pretty hard to hide cigarette usage (smell, color of
| teeth). Vaping is likely to be much easier to conceal
| though (does that count as "tobacco" though?)
| InitialLastName wrote:
| (Potentially in some US states): Your biological material
| was found in the bio-waste can of a facility that was
| performing illegal gynecological operations. You're under
| arrest for the murder of a fetus.
| Symmetry wrote:
| In general, a person's performance in their job is the
| best evidence for their future performance, followed by
| tests you can give them, followed by their genes. That's
| not to say that there aren't pointy haired bosses who
| could be sold a load of snake oil on the subject but
| that's probably nowhere you'd want to work anyways. And
| with medicine pre-existing conditions are a much worse
| problem than genetics could ever be but thankfully in the
| US at least our existing laws seem to have that in hand.
| red-iron-pine wrote:
| you have genes for red hair, blue-ish green eyes, a
| facial structure that looks like X, or Y, and a skin tone
| of Z.
|
| with a reasonable degree of accuracy you can then predict
| what that person looks like.
|
| epigenetics and other factors make that something like a
| "best guess" approximation, but it is a good start.
| phero_cnstrcts wrote:
| With digital IDs becoming more integrated in daily life
| you would probably never even see the job posting.
| gurumeditations wrote:
| A lot of places already decide gay people shouldn't have
| kids. This is in democracies. Gene scenarios not needed.
| Only straight supremacy.
| hef19898 wrote:
| Just take all the criminal cases in which DNA was used to
| convict innocent people. Now imagine that with a DNS
| database in the background as huge as 23andMe.
|
| And of course selling DNA data was the idea from the get
| go...
| seydor wrote:
| if there is more data, the dna identification will be
| more precise and correct also. Ideally i want this data
| to be open source, and thankfull you can download your
| data
| hef19898 wrote:
| You are aware that Gathaca wasn't a blue print to follow,
| right?
| seydor wrote:
| movies are not real life
| salawat wrote:
| Movies by definition are not real life _yet_.
|
| Akin's Laws of Spacecraft design apply. If you want to
| have the biggest effect on how something shakes out
| become an artist.
|
| And ideas have a flow. Nentally disturbed/child->Artist->
| Scientist/Engineer/Academic/Professional->Everybody else.
| Some other diversions may apply.
|
| The mentally disturbed are the most sensitive to society
| at large's edge cases, but largely incomprehensible to
| everyone else due to divergent world view. The Artist
| breathes the surreal and unarticulated, in the practice
| of their work articulating that which defies the
| aggregate capability of the majority of society to
| manifest. That seeds the way for elucidation, exposition,
| and enumeration for the current flight of society's
| operant effectors, who implement it, which then trickles
| into the pool of common knowledge.
|
| If you're seeing an artistic work in your life, and _not_
| keeping an eye out for it 's implementations. You're
| running half-asleep to be frank.
| ThrowAway1922A wrote:
| You're right, real life is worse.
| mfld wrote:
| You can release your DNA with an open (source) license. I
| personally would be hesitant, similar as I would not open
| source my fingerprints, health records etc., even if it
| is forbidden to abuse them.
| lotsofpulp wrote:
| Just take all the criminal cases in which DNA was used to
| exonerate innocent people.
|
| Or
|
| Just take all the criminal cases in which DNA was used to
| close cold cases.
| hef19898 wrote:
| The age old question: how many innocent people we are ok
| with convicting in order to convict the guilty ones.
| Personally, I don't think a for profitbcompany should
| even play the smallest role in that.
| sanatgersappa wrote:
| Or they might develop a "cure" that gives you the hard work
| gene, or remove your crime gene...there are 2 ways of
| looking at this.
| panta wrote:
| so that someone else can decide that if you don't have
| that hard work gene you are unhealthy and need to be
| "cured"? Nice dystopia.
| sojournerc wrote:
| "Gattica" is a great movie that runs with this. The entire
| society is built on separation on DNA and designer
| genetics.
| tick_tock_tick wrote:
| Gattaca while a great movie always rubbed me wrong as at
| the end it turns out society was "right" and he probably
| doomed the mission. His heart was "bad" it turns the
| whole movie from someone overcoming societal limitation
| to someone ruining the space mission so they can see
| space.
| adhesive_wombat wrote:
| Also a heart 10000 beats overdue is about 3 hours! Even a
| million beats is well under 2 weeks.
| renegade-otter wrote:
| "The poors who somehow got into this fine dining
| establishment through all the obstacles we have carefully
| constructed are really ruining the vibe here!"
|
| The space mission may not be the perfect allegory, but
| that's just nitpicking. How many people watched Gattaca
| and thought, "Oh no! That crippled tool ruined the space
| mission! Not my tax dollars oh my stars!"
| vGPU wrote:
| > his genetic profile indicates a high probability of
| several disorders and an estimated lifespan of 30.2
| years.
|
| That seems to be a very valid reason to not send someone
| on a space mission.
| renegade-otter wrote:
| And many people get well from placebo medication. We
| don't fully understand human willpower and its ability to
| overcome the cards we were dealt at birth. The whole
| movie is literally about how genetics is not destiny.
| lotsofpulp wrote:
| Just because the movie claims it does not mean it is
| true.
|
| Genetics may partly, or even significantly, be destiny.
| jbjohns wrote:
| I thought the point was that society was completely wrong
| and was basically overhyping the thing they'd all bought
| into. They had decided their method was so superior that
| naturally born people wouldn't live past 30. He'd already
| well beaten that, outlived his parents and didn't seem
| sick now. Society was far removed from reality and
| somehow forgot that natural birth worked fine for all but
| very recent human history. I find this statement about
| how society works more compelling than the cautionary
| about genetic discrimination.
| nintendo1889 wrote:
| The German haplotype already has that. Just hire Germans
| for creative engineers or Asians for noncreative ones.
| concordDance wrote:
| The world is already GROSSLY, AWFULLY unfair due to
| genetics. This amount of unfairness is immensely larger
| than the amount that would be caused by genetic information
| being more widely available.
|
| Making genetic information more widely available has likely
| benefits far far larger than the costs.
| Podgajski wrote:
| Can someone explain why they're downing this? As Someone
| with schizoaffective bipolar disorder and Asperger's,
| which is definitely affected by genetics because I seen
| in my genetics, I don't see what the disagreement here
| is?
| GoblinSlayer wrote:
| Asperger's syndrome is an advantage though, because it
| gives you a tendency to think accurately and practically.
| Podgajski wrote:
| I agree, but the other behaviors and sensitivities I have
| made extremely difficult in my life not because I
| couldn't handle it, but because other people couldn't.
| ThrowAway1922A wrote:
| At the expense of relationships and the ability to form
| them. Being on the spectrum is not a good thing, it
| seriously messes up parts of your life.
| cutemonster wrote:
| (I didn't downvote)
|
| Can I ask, what would be your ideas about how DNA
| information could be used? For example, shared with the
| person themselves, and no one else -- so they know what
| the reasons can be, for problems they run into later in
| life.
|
| Or do you see any government agencies that it'd be good
| if they had access to the DNA info? The health care
| system maybe? (If they didn't share the data against ones
| will, say)
| RHSeeger wrote:
| The world is as unfair as it is even _with_ us pushing
| back a lot on sources of unfairness. If we didn't push
| back because "it's already unfair", it would add up quick
| and be a _lot_ worse.
| GuB-42 wrote:
| Now imagine a future where not only we are screening job
| applicants based on their genes, that police targets a
| specific genetic profile, but we also mark people with the
| "bad" genes so that anyone can recognize them. Some sort of
| color coding, like white for good, black for bad...
|
| Yeah... see where I am going...
|
| Gene-based discrimination is not new, in fact, it used to
| be the norm. Now, it is called racism, and we are actually
| in a much better situation than we once were. Not perfect
| of course, but we have laws in place to limit such abuse.
|
| If discrimination based on "non color-coding" genes is not
| already illegal in first world countries, I suspect the
| existing laws will soon be updated to reflect that once it
| starts being practical. And I think it will be more readily
| enforced than for traditional racism. Racism is a natural,
| quasi-instinctive bias that you actually have to fight
| against, because there is no way you can ignore the skin
| tone of the person in front of you, but you can simply not
| use a genetic sequencing test. Plus it sounds like
| eugenics, something that became kind of unpopular since the
| 1940s.
| cbozeman wrote:
| You don't have to imagine it, it's 1997's _Gattaca_.
| GuB-42 wrote:
| Gattaca is fiction, with more attention given to having a
| good story than to realism.
|
| Which was a success, it is a good story, and a movie I
| recommend.
|
| What I think is that Gattaca, like most good dystopian
| fiction feels much more realistic than it really is,
| almost visionary. It is by design, it is a reflection of
| real world issues that readers/spectators are familiar
| with at the time of the writing, pushed to the extreme,
| and our natural negativity bias tend to make us forget
| the parts where the story was wrong in its terrible
| predictions.
| boppo1 wrote:
| >not already illegal in first world countries, I suspect
| the existing laws will soon be updated to reflect that
| once it starts being practical.
|
| I'm not so sure. Racism was shown to be completely
| unsupported by science: https://en.wikipedia.org/wiki/UNE
| SCO_statements_on_race?wpro...
|
| There were a couple notable dissenters (some bigwig
| statistician iirc), but overall it was a clear consensus.
|
| If it is shown that certain genes are causative of
| violent behavior, the legal situation might not shake out
| so cleanly. Already the debate has begun:
| https://www.newyorker.com/magazine/2021/09/13/can-
| progressiv...
| nerdix wrote:
| This is excellent.
|
| Anyone can lose the genetic lottery (and everyone might
| lose it in some way). Even if you're considered fine by
| the genetic standards of the day, you can never be sure
| that your future kids or grandkids will be. Everyone will
| know someone, a close friend or family member, that's
| been negatively impacted by the laws so it's much harder
| to boogie man or "other" them.
|
| Those laws would be wildly unpopular and would never
| survive in a democracy or even a populist dictatorship.
| bluefirebrand wrote:
| You just described the major plotline of the movie Gattaca.
|
| We watched and discussed that movie in my Ethics of
| Engineering course in university.
|
| Kind of ironic to me that the movie they used to try and
| teach me how not to use engineering for unethical purposes
| may be coming true today.
|
| Edit: Wiki page for the movie if anyone's curious:
| https://en.m.wikipedia.org/wiki/Gattaca
|
| Pretty good movie from what I recall. Some good discussions
| around ethics that came out of it.
| salawat wrote:
| I mean, everything poignant from my Ethics of Comp Sci
| has become status quo nowadays.
|
| Using computers to generate imagery that is then deployed
| duplicitously by the person who asked for profit? Yup.
|
| Ubiquitous surveillance and geofencing? Yep.
|
| Artificial constructs for remote deployment of lethal
| weaponry? Yup.
|
| Poisoning of the well of knowledge to make it more likely
| that one particular source gets visited rather than
| another? Yep.
|
| Attempts by monied interests to divest themselves from
| the implied responsibility to hire in society through
| increased mechanization? Yep.
|
| To be frank, I'm starting to take Ethics courses as
| societal statements of intent nowadays.
| thejackgoode wrote:
| I kind of agree with the parent comment that it was stupid on
| my behalf, but I paid _another_ company to give me medical
| results from 23AndMe data.
|
| And guess what, they got bought by MyHeritage
| theclansman wrote:
| I don't understand what are these immense benefits, to catch
| more criminals? Since when has throwing more people in jail
| reduced crime? I guess this would stop someone who is
| plotting a murder but a school shooting is gonna happen
| either way.
| TFortunato wrote:
| Parent post said "science/health", nothing about preventing
| crime or jailing more people
| ballenf wrote:
| I don't know about "throwing people in jail", but putting
| criminals in jail certainly reduces crime rates. As opposed
| to not putting convicted criminals in jail.
|
| But we hardly need advanced DNA profiling to catch 99.9% of
| criminals (versus just standard DNA matching).
| JadeNB wrote:
| > I don't know about "throwing people in jail", but
| putting criminals in jail certainly reduces crime rates.
|
| That's the sort of statement that seems plausible, and
| even intuitive, but probably needs a citation. It
| wouldn't wholly surprise me if it were true, though at
| moral and economic cost; but it would surprise me even
| less if it were false.
| edgyquant wrote:
| It's literally self evident that a person in jail can't
| commit crimes on the outside. The statement itself
| contains all the axioms you need, citations are not
| something required here. It's like saying a dead baker
| reduces the amount of bread in a town for that day and
| you asking for a source
| JadeNB wrote:
| > It's literally self evident that a person in jail can't
| commit crimes on the outside. The statement itself
| contains all the axioms you need, citations are not
| something required here. It's like saying a dead baker
| reduces the amount of bread in a town for that day and
| you asking for a source
|
| You didn't say "reduces the crime rate outside of
| prison." I assumed that's what you meant, but it's not
| clear that ignoring the crime rate inside prison is a
| reasonable statistic.
|
| People in prison also, presumably, eventually get out,
| and a claim that prison officials can accurately deduce
| the likelihood of recidivism, and whether it has been
| decreased rather than increased by time in prison, is far
| from clear.
|
| Finally, putting lots of people in prison has an effect
| on people _outside_ of prison. For example, it is
| possible--though, again, I don 't know; citations are
| needed--that high incarceration rates lead to _more_
| crime outside, since, if a member of a community has a
| good chance of going to prison whether or not they commit
| a crime, then prison can cease to have a meaningful
| deterrent effect in that community.
| DontchaKnowit wrote:
| Well if the data is being sold to drug companies, one
| massive benefit that is glarinly obvious is that drug
| companies may mow have an enormously valuable dataset for
| developing new medical technologies.
|
| Im as anti-dna info-sharing as anybody, and I wont begiving
| 23andme a sample ever, but this is admitedly probably a
| pretty good thing. Even if it does ultimately serve to
| enrich some mega corps,consumers will probably get some
| amazing new treatments/therapies/medicines out of the deal.
| suoduandao3 wrote:
| Gotta agree with the DNA Data not worth protecting point. My
| every evolved instinct tells me to spread my DNAs data as
| widely as possible. Even if I don't see an immediate benefit
| I'd be foolish to argue with that kind of track record.
|
| There's something important there about the nature of the
| information economy but I can't fully get my mind around it.
| fritzo wrote:
| Great point. Every one of us now has the opportunity to
| _be_ open source.
| walleeee wrote:
| Which wouldn't be so bad if we didn't have a massive,
| unaccountable complex of public and private actors
| building surveillance and discrimination into the
| structures of governance. The fact that this is all
| extremely baroque and often faulty doesn't make it any
| less likely to ruin your day for no good reason
| mfld wrote:
| But several consumer genetics companies do offer health
| reports. AFAIK it is perfectly allowed to turn insights from
| studies into personalized reports as long it is clear that
| this is not diagnostics or medical advice.
| seydor wrote:
| https://int.customercare.23andme.com/hc/en-
| us/articles/21769...
|
| People can use some external services like promethease.
| 23andme is likely to have more thorough data however.
| JTbane wrote:
| I don't know, I'm most worried about law enforcement abusing
| access to DNA data, and courts being absolutely convinces of
| a 0% false positive rate. We may see a wrongful conviction
| based on DNA dragnet eventually.
|
| https://pubmed.ncbi.nlm.nih.gov/12570198/
| Taylor_OD wrote:
| Yeah... I kind of dont care? Use my DNA to do whatever good
| you can with it. I can see how someone could use this
| maliciously, but there are far simpler ways to mess with
| someone's life. 23andMe also has an opt out check box, right?
| lm28469 wrote:
| > Yeah... I kind of dont care? Use my DNA to do whatever
| good you can with it
|
| Like decline you health insurance because of high
| probability of cancer or other issues ?
| jjallen wrote:
| I mean sure we pay them and now they are "selling" our data to
| pharma companies... to research human health and learn more.
|
| At some point does being against other people using your data
| work against you? If every human refused to allow their DNA to
| be used for research the entire species would be worse off.
|
| The obsession with protecting our data is very strange to me.
| cornholio wrote:
| They are selling the data for (allegedly) medical research
| now. Tomorrow, they will sell it for genetic discrimination
| against you. The point is: it's not your data anymore, and
| from your perspective it can only be used against you.
|
| While I understand there are pro-social uses of this data,
| such as medical research and identifying criminals and their
| victims, those exceptions should be clearly delineated by law
| in a white list, with strong safeguards, with the default
| being DNA privacy.
| Podgajski wrote:
| What do you mean "those of us didn't see this coming"? They
| said out right this is what they were going to do with our
| data. This is nothing new. This is just an extension of the
| same thing they were doing.
|
| Plus you can opt out and you could delete Your profile and your
| data and download the raw data to use yourself.
|
| I accepted this trade-off because I had an unknown genetic
| condition in my family and this helped me find out what it was.
| spacecadet wrote:
| This is the story of the last 20 years tho.
| Communitivity wrote:
| Agreed, and it's worse than not just getting your consent. They
| will likely make money and patents off of some of those DNA.
|
| There are many examples out there of people doing that with
| cells from tissue, here is one from https://www.wipo.int/wipo_m
| agazine/en/2006/05/article_0008.h...:
|
| "Mr. John Moore suffered from hairy-cell leukemia. In 1976, Dr.
| David Golde of the University of California Medical Center,
| recommended that his spleen be removed in order to slow the
| progress of the disease. Mr. Moore signed a written consent
| form authorizing a splenectomy, and surgeons removed his
| spleen. Dr. Golde and his research assistants extracted tissue
| from the discarded spleen, having recognized its value for
| research to develop possible ant-cancer treatments. In the next
| three years they established a cell line from the extracted
| T-lymphocytes. Mr. Moore was not informed about the research
| work or the potential of the cell line. In 1984 Dr. Golde was
| granted US patent 4438032 on the cell line, which generated
| substantial revenue through commercial arrangements with two
| biotech firms."
| dools wrote:
| "which generated substantial revenue through commercial
| arrangements with two biotech firms."
|
| Absent from this statement is that when biotech companies
| generate revenue from cancer treatments it's probably because
| they're treating cancer.
| throw__away7391 wrote:
| Exactly. If they were for example using genetic testing to
| set your insurance rates or something like this, that's
| dystopian. Doing medical research that leads to successful
| treatments for deadly diseases is hardly the sinister plot
| people seem to be implying it is.
| dorfsmay wrote:
| Are there clauses in 23andme type companies that they
| will never share your data with insurances?
|
| What if it got bought by an insurance?
| throw__away7391 wrote:
| The OP wasn't even talking about 23andme, it was some
| doctors at a university.
| ladberg wrote:
| It's been illegal for insurance to use your DNA to
| discriminate against you or charge different costs since
| 2008 (see the Genetic Information Nondiscrimination Act).
|
| If that changes I'll regret having used 23andme, but so
| far I'm not worried.
| suoduandao3 wrote:
| There is a culture of exploitation in the pharmaceutical
| industry - exhibit one being the opioid epidemic - that
| would justify default suspicion any time a major player
| gets more leverage.
| mc32 wrote:
| It would be the right thing to inform and share some tiny
| small part of revenues with these kinds of patients, even
| if not legally required. Of course I can see a problem with
| some being greedy and thus denying access to treatment to
| others.
| gertrunde wrote:
| Very similar to the case of Henrietta Lacks.
|
| (https://en.wikipedia.org/wiki/Henrietta_Lacks)
| ceasefire wrote:
| next: "our" clone of your genes.
| shunyaekam wrote:
| What is the big issue? Is the data not anonymized?
| lacrimacida wrote:
| Until they have a leak or a breach... Don't trust these
| companies blindly..
| leotravis10 wrote:
| The data is never truly "anonymized" since companies can
| easily de-anonymize data in minutes if not seconds as proven
| time and time again.
| shunyaekam wrote:
| Sure but what exactly is a malicious scenario in this case?
| That they'd use this data to probe which drug to do R&D on?
|
| If this was an insurance company I wouldn't have asked this
| question.
| gonzo41 wrote:
| Big Tech doesn't deserve our trust. It has an abusive
| relationships with the populace.
| karpour wrote:
| I wonder how this works with the GDPR. Not sure if their
| service is even available in Europe, but if it is, Europeans at
| least should be able to just require them to delete all data
| whenever they want.
| jvanderbot wrote:
| As an alternative take,
|
| Imagine a nationwide US gov research program that collects DNA
| for the purposes of prescription drug research.
|
| They'd be storming the capital again, no matter how much good
| it can do.
|
| Now imagine we had to raise taxes to support it. Preposterous!
| Communism!
|
| Instead a company was founded on the promise of providing a
| useful product to both consumers and producers. Let them get
| rich, I'm pretty sure this is a net win for all parties.
| bluefirebrand wrote:
| My hope is that Drug companies might be able to make
| breakthroughs in research for better treatments for people with
| rare genetic disorders by using this data.
|
| But cynically I bet they're probably going to use it for
| marketing demographics purposes
|
| Really worried about the day that it's Insurance companies
| buying up our DNA data to make sure we get the right coverage.
| Eumenes wrote:
| 23&Me was literally founded by Sergey Brin's wife at the time.
| This was a data harvesting operation from the start.
| phil21 wrote:
| I generally agree that 23andMe was obviously going to end in
| something like this. The actual value was never in the "fun
| personal genetic testing" - it was always the aggregated
| population-wide DNA data.
|
| However, I do think a national "DNA database" would be
| interesting, if it could _actually_ be made truly anonymous. I
| have no idea if that is possible, but assuming it is - I think
| there would be massive benefit for this data to be available to
| public (and private) researchers for the cost of simple
| maintenance and upkeep of the database. Who knows what great
| discoveries could be made in the future with this data
| available at the fingertips of many.
|
| However, I don't know enough on the subject to understand the
| evil potential with a database that can by truly anonymous.
| Maybe it enables making a new cancer vaccine for the most
| common type of cancer. Maybe it enables creating a virus that
| is lethal after exactly 28 days to only a certain segment of
| the population carrying a specific gene. This bit is certainly
| what gives me huge pause. I also suspect truly anonymizing such
| a database would be extremely difficult to nigh-impossible.
|
| That all said, while my DNA is in government databases against
| my will (many mothers signed up for those "get your kid back if
| kidnapped" law enforcement drives in the 80's and 90's) I will
| never willingly submit a sample to such a service unless I have
| exceedingly clear control of all my data and assurances it will
| be destroyed after whatever specific results I need come back.
| corethree wrote:
| What abuse? The only abuse is that I'm not paid for it or
| instead I paid to have my DNA public.
|
| But other than that how will I be abused?
|
| Additionally the incentive for abuse just isn't there. The
| companies that buy this data don't care about individuals. They
| want aggregate data.
| ninja3925 wrote:
| This a poor argument which basically criticize any cost sharing
| agreement with multiple payers.
|
| "Look, GM is getting gov subsidies but we still have to pay for
| a car!" Not a strong argument indeed.
|
| 23andme has democratized DNA testing by making it affordable
| when the numbers didn't work. This is remarkable in itself.
| Kudos to them.
| nullserver wrote:
| Spent several years with a mystery illness that nearly killed
| me. Turned out to be genetic. Easy treatment, but only if
| you're aware. (Factor 5 Leiden)
|
| Kind of regret not getting the full work up done at one of
| places. Maybe would prevented a number of blood clots.
| keep_reading wrote:
| > 'hacker lifted your sequences or prints'
|
| no 'sequences or prints' were ever accessed by the hackers
| onlyrealcuzzo wrote:
| Some people make enough money that the utility of 23andMe is
| worth it them, and they don't care if 23andMe makes money
| selling their anonymized data on the side.
|
| A lot of people just really don't care about data privacy at
| all.
| hnben wrote:
| > they don't care if [...]
|
| I do care. But I still think the benefit outweights the
| downsides.
| orthecreedence wrote:
| I always imagine if 23andme existed in the 1930s. Would have
| made the job of certain groups much easier. But that will never
| happened again.
| andy_ppp wrote:
| And probably the potential to create viruses that target
| certain DNA... I would assume multiple governments are doing
| work on things like this.
| sonicanatidae wrote:
| 110% with you on this. In fact, even if they hand out your
| data, against any agreement you had with them, the worse they
| would face would be a pittance fine.
|
| There is no situation where they would put people over money
| and DNA is immutable.
| Aerroon wrote:
| The worst part is that all it takes is for one relative to be
| stupid enough to use the service and all your privacy
| precautions are undone.
| puzzledobserver wrote:
| About ten years ago, I sent a sample of my saliva to 23andMe.
|
| It was only later that I realized the privacy implications of
| what I'd done, and asked them to forget my data and deleted my
| account.
|
| Is there anything more I can do to protect myself at this point?
| jacooper wrote:
| Be awarez they will not remove your DNA data from their
| databases.
| slekker wrote:
| Even if I bought their kit in Europe? Does GDPR not apply?
| keep_reading wrote:
| Yes they will and they'll destroy your sample. I did this
| years ago when I deleted my account. It was very clear how to
| do this.
| Minor49er wrote:
| Maybe soon we'll see DNA Scrambling as a Service
| digging wrote:
| You could probably try to mount a legal fight if you've got the
| money and the time, because they probably didn't delete
| anything, and there's a chance doing so was illegal. But, it
| probably wasn't even illegal for them to ignore your request.
| Timshel wrote:
| Move to eu or California and use GDPR or CCPA to request all
| the information they might have left ?
| chews wrote:
| Merck was involved from day one. Very early in the database
| scraping they identified a cancer treatment based on data
| collected within the first year of operation.
|
| A company that helps drug company was always the plan.. they just
| needed that googol of human data.
| DoreenMichele wrote:
| Bonus points: It's drugmakers.
|
| Our so-called "health care system" isn't about your _health_ and
| welfare at all.
|
| We have a lot of chronic illness these days because _treating_
| you forever pays the bills, _curing_ you does not.
|
| Are we sending this data to universities to research optimal
| nutrition for your genetic profile? Absolutely not.
|
| No money in helping you eat right and live better.
|
| Lots of money in poisoning you with their potions and blaming it
| on "your condition."
| kulahan wrote:
| I get what you're saying, but nutrition is probably not a great
| example because we know nearly nothing about it. It's not ok to
| lock someone in a room and force-feed them for years to get
| data.
|
| Anyways, that aside, what's insane to me is that there is a
| nearly-simultaneous story of the Opioid epidemic and people
| aren't losing their minds over this.
| DoreenMichele wrote:
| So we shouldn't research nutrition until we know more about
| it?
|
| ( _Insert Spock eyebrow_ because this concept fails to
| compute for me.)
| kulahan wrote:
| My point is you're putting the cart before the horse - you
| don't research individual genetic diets before you research
| generic diets
| heavyset_go wrote:
| It's possible to investigate whether diets produce
| beneficial results in subgroups even without having a
| proper general model of diet and nutrition.
|
| It's analogous to investigating whether drugs produce
| beneficial results in people with X disease even without
| having a proper model of how exactly X disease works.
| DoreenMichele wrote:
| That also makes no sense to me.
|
| It's like saying you need general recommendations for sun
| exposure before you can research specific recommendations
| based on skin type/ethnicities.
|
| It's nonsense. Pale-skinned Caucasions need different
| recommendations from other ethnic groups with more
| baseline melanin.
| kulahan wrote:
| We don't know that pale-skinned Caucasians need different
| recommendations in this scenario. That's the point. We
| barely know anything about nutritional science, let alone
| what one specific race of people needs.
|
| If you have no clue how sun exposure actually affects the
| body beyond "ow burn hurt", you don't have the necessary
| knowledge to begin creating highly specific treatments.
| What would you base the science on? There's no real
| foundation.
| light_hue_1 wrote:
| Everyone here has a negative take. Yet, when people post that
| cutting edge drugs might save their lives you all want drugmakers
| and the FDA to move faster.
|
| What is it?
|
| Do we want to save people's lives or not? This is critical data
| for developing new drugs.
|
| Keep in mind all of the people who did this, said they want their
| DNA to be used for research. If you didn't opt into that, you can
| still use 23andMe! But your DNA is never used. What's the problem
| here? I volunteered my DNA. And if there was a government scheme
| for people to do so that so that we can help advance medical
| science faster, I would sign up tomorrow.
|
| Do you want to live longer? Find a cure for your grandparent's
| cancer? Find a cure for multiple sclerosis? Find genetic markers
| for autism? etc. All of these require data.
|
| The hypocrisy and knee jerk reaction on HN about these issues is
| astounding.
| digging wrote:
| You can look through posters' comment history, you know. Come
| back when you've found one person who's actually making both of
| those arguments instead of fighting this strawman.
| dotcoma wrote:
| In accordance to the promise they made to their customers, or in
| clear violation of it ?
| underseacables wrote:
| Granted, it's not much, but I did this under an assumed name and
| declined to allow them to keep the sample. I think it's good that
| the DNA is being used for science, I just hope I can keep some
| privacy from it.
| heavyset_go wrote:
| If your family sends in their DNA, they'll de-anonymize you,
| unfortunately.
| underseacables wrote:
| I take your point, but the only family I have is my wife and
| children. My entire lineage has weathered on the vine from
| everyone dying and not having children. Outside of that my
| nearest relative is a second cousin once removed. I'm in a
| unique situation, but I take your point that it could still
| be identified down the line.
| happytiger wrote:
| We bought their kits but after reading their terms and conditions
| never used them. It was clearly a land grab.
|
| Hardly matters as close relatives did it anyways.
|
| We need a privacy bill of rights that keeps companies from using
| our very DNA like this in the first place. without a strong legal
| framework, misuse is inevitable.
|
| Also, consider that much genetic information about an entire
| lineage is revealed by one person opting in for the entire
| lineage. This has implications beyond one persons choice, and
| those implications are long reaching and will become increasingly
| economically impactful as technology matures. Is it morally
| correct that companies can know tons of genetic information about
| people who never opted in merely because they share DNA with one
| that does? It's not handled in the T&Cs that's for sure. Not has
| 23andMe ever addressed it.
| graphe wrote:
| Why? People choose to upload their data if they want to. If by
| 'stealing' you mean your voluntary upload and not reading the
| TOS it's hard to have sympathy. Most people CHOOSE to upload
| their data to private databases to get more info since the us
| government is rather conservative with their databases and it's
| not HIPAA either.
| happytiger wrote:
| Because companies incentivize behavior and pushing all
| responsibility onto the end use for predatory business
| practices is very outdated thinking.
|
| You can choose not to have credit but without credit you
| can't really fully participate in the financial system, but a
| home or a car, rent an apartment, etc. But it's a choice to
| participate.
|
| You buy a computer it's not really a choice to accept the OS
| terms and conditions. Not if you want to use the computer.
|
| Many things masquerading as choices are not a choice really,
| though people pretend they are.
|
| We don't need sympathy, we need ironclad data protection for
| users who _do_ care even if others do not. The illusion that
| consumers can make a choice on many of these products and
| data agreements is a useful fiction that benefits companies
| and is often subverted to unfairly benefit just one of the
| parties: the current system is frequently a predatory
| exchange by companies designed to incentivize behavior that
| benefits them under the illusion of choice.
|
| Having seen data brokerages in great depth I can tell you the
| amount of information and type of information collected it
| hardly being done benevolently, and it always seems to go
| right to the edge of legality and morality in terms of what
| can be collected. Most importantly unless you are working
| deeply with the datasets it's hard to understand just how
| profoundly powerful recombined data can be. So while users
| are offering approval to collection of data on a data
| platform basis the recombination of data is almost never
| explicit and has far reaching implications most people cannot
| really fathom. Recombination of released data is never
| presented to users in this way, as each company contributes
| their part and looks benign in isolated agreements, but they
| are not. Particularly not in the age of AI.
|
| In addition data is durable long after that company and their
| aligned business model is defunct. Yet there is no opt in for
| continued use even if the data goes to a use that would be
| objected to by the original grantor. This is deeply
| problematic.
|
| To call that a "choice" to release information is farcical
| under the current system. Beyond dark pattern in gaining the
| data, endurance beyond intention, unintended use and
| irrevocability are deeply, deeply problematic issues.
|
| Respectfully, they "agreed" is a weak argument given the
| complexity of the modern paradigm.
| graphe wrote:
| To go into philosophy a bit, you make a deal with society
| when you live in it (Rousseau). If you post online, on the
| clearweb, you should expect some logging where you
| volunteer your information. If you upload your DNA, it's
| not accident. The privacy laws are as such that encourage
| days gathering behavior, although there are places where
| photos and cameras are not allowed to take pictures of
| others.
|
| These actions are on the edge of legality because it's
| where there is growth. It's the nature of an intersection
| of capitalism and science. If it was illegal they would
| only do it when its wasn't enforceable (Uber).
|
| All these fears haven't come to pass and DNA had been in
| databases for many decades, this fear of the unknown would
| freeze everyone into inaction if unintentional consequences
| were a great fear no German would have another child again.
| heavyset_go wrote:
| > _If by 'stealing' you mean your voluntary upload and not
| reading the TOS it's hard to have sympathy._
|
| They have my sympathy, because ToS agreements are BS that
| even companies don't expect users to read.
| heavyset_go wrote:
| Yet another example of individual customers not being companies'
| real clients.
|
| As long as there are organizations willing to pay
| millions/billions for a company's customers' data, that data will
| eventually be sold/licensed/shared/etc to them. Companies would
| be leaving money on the table otherwise, and shareholders won't
| have that.
| catchnear4321 wrote:
| it's fine, gsk should be more than happy to sell me back some
| organs some day, or some clinical immortality, or something.
|
| probably.
|
| what's the point if there's not more money to be made? in
| perpetuity?
|
| from me?
|
| there will be a loyalty program.
|
| it's fine.
| anm89 wrote:
| This shit really pisses me off because my brother did 23 and me
| which pretty much means my data is in there without consent.
| j7ake wrote:
| Is there any company that offers your DNA to be sequenced but
| will promise to just give you back the raw data (or aligned to
| genome) without storing or selling it to companies?
| rocketbop wrote:
| Even if there were, it's a lot to give away based on a promise.
| j7ake wrote:
| It's a start up opportunity. There are ways to make privacy
| guarantees in the protocol by proper barcoding and
| encryption.
| DoingIsLearning wrote:
| Is there any form of GDPR data takeout/deletion request for
| European services of genetic sequencing?
|
| I unfortunately had a close family member go down this route
| because he "was curious".
| GalaxyNova wrote:
| I don't know why people think that DNA is so personal and
| private. it's the equivalent of IP addresses for biological
| beings.
| fxtentacle wrote:
| Because insurances can use DNA knowledge as a justification for
| charging you more.
|
| If having the wrong IP address costs $1k extra per month, but
| only of other people know, then you'd also be more careful
| about keeping it a secret.
| bossyTeacher wrote:
| This! Shocking that the usually privacy-aware, sciency, smart
| HN crowd is struggling to grasp such a simple concept
| polski-g wrote:
| > Because insurances can use DNA knowledge as a justification
| for charging you more
|
| In America they cannot. This is forbidden by law.
|
| ... But they should be allowed to, you are more risky to
| insure. Just like under 25-yo's are more prone to accidents;
| or coastal houses are more prone to flooding.
| 2rsf wrote:
| Isn't it more like your apartment and specific renovations
| plans?
| tgv wrote:
| Can you address me by my DNA?
|
| Even so: processing IP-addresses is not allowed in general, in
| the EU at least. You need permission or a specific, allowed
| goal.
| rsaxvc wrote:
| To continue the analogy: probably, you're just not on the
| right subnet.
|
| In the US many states collect DNA samples at birth, as well
| as for citizens born abroad.
| RadixDLT wrote:
| haha feel sorry for everyone who paid, these assholes are
| doubling down and screwing their customers even more
| sparrowInHand wrote:
| ? Drugmakers are not the problem.
|
| Insurrance is.
|
| The bad teeth everyone has in the family?
|
| Uninsurable for all your descendants. The mental problems some
| developed? No coverage of that in life-insurrance - forever for
| all descendants carrying the genes. More then average aggression
| as a teenager? Presume your kids on some invisible watchlist.
|
| You are already living in a invisible Gattaca.
| prepend wrote:
| In the US it's illegal to use dna data for health insurance
| [0], or employment.
|
| So if insurance is using this data it could be pretty rough for
| the insurers and 23andme.
|
| [0]
| https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...
| asne11 wrote:
| does legality of a thing prevent big pharma from doing the
| thing?
| marcinzm wrote:
| Pharma is not insurance.
| koheripbal wrote:
| Big pharma does not run insurance
| prepend wrote:
| This law is unrelated to big pharma, but I think the answer
| is "yes, but pharma follows the law."
|
| Or at least the law as they interpret it. Look at the
| opioid madness and even with that, I think big pharma was
| being Lawful Evil. Once the law is determined, I think they
| follow it. Even though they lobby to change it.
| YetAnotherNick wrote:
| Insurance companies could directly ask for DNA if they
| don't care about legality. And in return they could easily
| offer say 90% discount to 90% of the people.
| sparrowInHand wrote:
| You actually do not need to ask the insurred ones. You
| need a family member that is with another insurrance
| company and conclude from there?
| _heimdall wrote:
| Its amazing how quickly sentiment shifted from despising the
| Sackler family and big pharma in general to raining free
| government money on big pharma and claiming they aren't a
| problem.
|
| That's one hell of an impressive PR turn around honestly.
|
| Don't get me wrong insurance companies are a problem too, I
| just can't let pharma off the hook.
| tiku wrote:
| Over 80% has checked that their DNA can be used for these kind of
| cases. So what is the problem, except for people not reading or
| caring?
| diggan wrote:
| How was that agreement collected? Was in similar to how OpenAI
| gets consent to use your data for further training, in that
| they disable certain unrelated features if you don't give
| consent, or was it unconditional?
| maronato wrote:
| It's very explicit and can be revoked
| diggan wrote:
| You happen to know the exact wording and the location of
| the checkbox?
| ezfe wrote:
| 23andMe website > settings > Research & Product Consents.
|
| There are three options:
|
| - Research Consent Document: Allow 23andMe researchers to
| use your genetic information to study a variety of
| topics, stripped of name and contact information and
| aggregated. May involve 3rd party collaborations
| including non-profits, pharmaceutical companies, and
| academic institutions. Results of research may be shared
| publicly.
|
| - Health Records Project: Connect your data to your
| healthcare providers using "Human API"
|
| - Individual Data Sharing: This is a supplement of the
| first one and includes additional data points, most of
| which come from interacting with the website.
|
| This information is available directly on the page I
| referenced, not hidden in a ToS document.
| diggan wrote:
| Thanks! So none of those are checked by default and the
| user has to manually go to "Settings" and then
| "Consents"? If that's the case, I don't see what the
| issue is, people really gave them the consent to do what
| they're doing now.
| ezfe wrote:
| Right, these require active consent from the user.
|
| The system will prompt the user to decide at enrollment
| time - they don't have to seek it out, but it certainly
| is not opt-out.
| ranting-moth wrote:
| Was is a pre-checked checkbox by any chance?
|
| There's also a few dark patterns to confuse the user to check
| the box. Put it next to a "Accept T&C" and people think they
| have to check it.
|
| Or word in a vague way. I doubt it said "We can sell your DNA
| to 3rd party who can then patent it".
| Clamchop wrote:
| No, none of this is true. They aren't playing games with
| consent. They even mention the potential for data breaches.
| spandextwins wrote:
| At least they aren't trying to hide it anymore.
| cinntaile wrote:
| This has been their plan all along and 23andMe didn't hide that
| so I don't see the problem.
| jvanderbot wrote:
| Imagine a nationwide US gov research program that collects DNA
| for the purposes of prescription drug research.
|
| They'd be storming the capital again, no matter how much good it
| can do.
|
| Now imagine we had to raise taxes to support it. Preposterous!
| Communism!
|
| Instead a company was founded on the promise of providing a
| useful product to both consumers and producers. Let them get
| rich, I'm pretty sure this is a net win for all parties.
| white_dragon88 wrote:
| Let the countries that don't have to worry about impressing a
| bunch of idiots (sorry, voters) do it instead. Problem solved!
| diggan wrote:
| > Imagine a nationwide US gov research program that collects
| DNA for the purposes of prescription drug research.
|
| It's not unprecedented in other parts of the world. Almost
| every single person born after 1975 in Sweden is a part of the
| PKU-registry whose usage is encoded in Swedish law:
|
| > On July 1, 2023, a new Biobank Act came into force (Act
| 2023:38). The Act specifies the purposes for which PKU samples
| may be stored: medical care and diagnostics, epidemiological
| studies, monitoring and quality assurance of operations, and
| clinical research and development.
|
| The promise was always that police would never be able to use
| it for lookups. Unsurprisingly, the police has been trying to
| get access to it since inception.
|
| I'm not sure how useful it's been though, I don't think I've
| come across anything major that has been solved via the
| registry, but then I'm not heavily in biology and related
| areas, so maybe that's just my ignorance.
| jvanderbot wrote:
| I agree wholeheartedly that other countries have implemented
| programs and general laws that the US should do, but am
| leaning on the general US sentiment that we're somehow
| different and should do everything (seemingly) the hard way.
|
| In this case, however, 23andMe seems like the "easy way"
| since it's paying for itself and is opt-in.
| ImaCake wrote:
| The USA does have a publicly funded genetic biobank mostly of
| US veterans. Its somewhat notorious in the research community
| for being difficult to gain access to. The UK biobank or the
| myriad other national biobanks are generally pay to use for
| researchers and are anonymous.
| vitalurk wrote:
| This was 5yrs ago: https://www.youtube.com/watch?v=HKQDSgBHPfY
|
| We should start caring about stuff.
| _ink_ wrote:
| I would really like to get my DNA analised. Mostly to see what
| deseases I might be prone to get. Obviously 23andMe cannot be
| trusted. Is there a more privacy focused provider? Ideally who
| just gives me the result and then deletes my data?
| y0ink wrote:
| This might be worth checking out, although it seems there are
| no guarantees when you're dealing with DNA:
|
| https://www.dnasquirrel.com/how-to-protect-your-genetic-priv...
| alexpotato wrote:
| Just a reminder that there is a Genetic Information Non
| Discrimination Act:
| https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...
|
| AND it was passed with a Republican president and with
| essentially unanimous votes.
|
| "In 2008, on April 24 H.R. 493 passed the Senate 95-0. The bill
| was then sent back to the House of Representatives and passed
| 414-1 on May 1; the lone dissenter was Congressman Ron Paul.[5]
| President George W. Bush signed the bill into law on May 21,
| 2008.[6][7]"
| rzwitserloot wrote:
| I assume in the smallprint when you got 23andMe to do a DNA
| analysis of you, it said that you give them the right to do this.
|
| One of those times where reading that small print realllllllllly
| was important. And anybody who signed it presumably didn't
| actually understand what they were signing away there.
|
| I'm not a lawyer, but if I'm 23andMe, and I get sued in the USA
| that there was no actual meeting of the minds here, and that they
| don't really have consent regardless of that smallprint, I'd not
| be all too confident I'd win that case (I wouldn't be confident
| it's a total loser of a case either; the users _did_ sign, after
| all).
|
| Same situation in the EU and I'd be even less confident.
|
| Hypothetically pushed scenario: A smallprint / clickthrough /
| 'you accept by tearing this sticker' style licenses dictate you
| owe them $100000 and a kidney if you fail to review the product
| with the maximum possible score within 1 month of purchasing the
| product.
|
| You tear that sticker and fail to review in time. They come
| a-knockin, scalpel at the ready. There's zero chance you lose in
| court. That's not something you get to stick in a clickthrough
| contract. No meeting of the minds would be the legal basis.
|
| Hence why I wonder: Will 'you signed away your rights; we now get
| to sell your DNA profile' actually hold up?
| mchusma wrote:
| I think US law has it backward, and health data should be
| publicly accessible by default, and very easy to share with
| researchers. I care so much more about solving diseases and
| reducing costs than I do privacy. I think people underestimate
| the costs of privacy on both. Unwanted effects (like
| discriminating based on data) can be legislated separately. Once
| we are all effectively immortal, I think we can loop back around
| to the privacy thing. I did 23and Me years ago hoping my data
| would be used for research.
|
| I feel that privacy absolutists dominate the narrative, but given
| the choice of privacy, cost, and effective medicine...how many
| people really would choose privacy?
| RyanAdamas wrote:
| >Once we're all effectively immortal
|
| This is the lie sold to every generation's wealthy and
| powerful. The idea that our tech now is better than before and
| we're all going to live forever.
|
| I don't disagree that health data should be public, but so
| should all medical procedures and prescriptions. They should be
| covered by single-payer, too. That way no one has to worry
| about their ailments, but are also accountable to everyone else
| for the services they use and demand.
|
| The idea we're going to live a lot longer than other
| generations is a common one among those beginning to lose their
| youth who spend too much time in the science-will-save-us
| narrative.
| kjkjadksj wrote:
| Other countries like Iceland have excellent genomics projects
| in comparison. 2/3 of Icelandic adults are sequenced and these
| are made available to researchers. They have represented a very
| important control population for medical genomics for example,
| among many other excellent projects.
|
| https://en.wikipedia.org/wiki/DeCODE_genetics
| galleywest200 wrote:
| Iceland does this so that they do not produce offspring with
| someone too closely related to them.
| more_corn wrote:
| They offer full account and data deletion. It's in settings at
| the bottom. Just sayin.
| collyw wrote:
| There is a surprise. Why would you give your data to these
| people?
| polski-g wrote:
| Because you want better drugs for humanity?
| noonething wrote:
| What could someone do with your DNA? Make a disease that targets
| only you?
| m3kw9 wrote:
| Are they anonymized? Would think this is illegal even if users
| agreed to it which most would be unknowingly agreeing. Like
| agreeing to hand over your first born.
|
| If anonymized, are there issues? If it helps cure disease with
| anonymous dna, why not?
| AlexandrB wrote:
| How do you anonymize genetic data? It's intrinsically linked to
| you.
| nathias wrote:
| good, I hope they can use them to make better drugs
| Jimmc414 wrote:
| To delete your 23andMe data, go to your account settings page and
| find the "Delete Your Data" option under "23andMe Data." You can
| download any or all of your data before you destroy it.
| krys1010 wrote:
| Gattaca is here.
| strangesmells02 wrote:
| > anonymized data to people who have agreed to submit for
| research
|
| Seems fine to me?
| eyeareque wrote:
| Did anyone find the fine print on what you agree to when you use
| their service? I am not surprised whatsoever.
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