[HN Gopher] Ethical, societal implications of genome-wide behavi...
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       Ethical, societal implications of genome-wide behavioral, brain-
       related traits
        
       Author : wglb
       Score  : 27 points
       Date   : 2023-05-22 16:18 UTC (6 hours ago)
        
 (HTM) web link (www.nature.com)
 (TXT) w3m dump (www.nature.com)
        
       | chromatin wrote:
       | In Box 3, "Guidance for best practices for researchers in the
       | context of GWAS", the authors propose 6 actions to mitigate
       | "misuse and misappropriation of GWAS results".
       | ("Misappropriation" is AFAICT defined as when findings are used
       | to support opinions contrary to the academic mainstream, and I
       | think this is implicitly supposed to mean use by racists). While
       | item 4 does not explicitly call out an end to open science (said
       | another way, permitting only use that is in accordance with the
       | prevailing zeitgeist), it and the introductory text in Box 3 does
       | hint that this is a possibility in the future.
       | 
       | " Ethical issues in research projects are overseen by IRBs, which
       | mandate that a full research proposal must be submitted,
       | evaluated and approved before the start of any project. Such a
       | research proposal typically contains both scientific and ethical
       | components. But these protocols rarely consider possible negative
       | impacts on society and how these can be mitigated, and we argue
       | that this should be added. Such a mitigation plan can include how
       | researchers plan to translate research findings to a lay
       | audience, how they plan to prevent or discourage commercial
       | companies from misusing results, and how to aim to decrease the
       | likelihood of misappropriation of results.
       | 
       | We propose six practical action items that can be included in
       | such a mitigation plan:
       | 
       | 1. Include a bioethical expert in all stages of a GWAS study: ...
       | 
       | 2. Include relevant patient groups or social communities: ...
       | 
       | 3. Explicitly state how the results should not be used or
       | interpreted: ...
       | 
       | 4. Prevent unethical usage without explicit permission: Most GWAS
       | researchers strongly advocate the public sharing and direct
       | download of GWAS results without going through a committee for
       | approval. This stimulates scientific advancement and is in line
       | with an open science policy. However, the downside of this is
       | that uses of GWAS results are not registered and therefore
       | possible unintended uses are not easily detected. The only way to
       | prevent unethical use of GWAS results by other researchers or
       | commercial parties is to only allow access after approval from
       | the principal investigator, or a data access committee. As long
       | as summary statistics are directly downloadable it is difficult
       | to prevent misuse by other researchers or non-commercial parties.
       | However, misuse by commercial companies can be discouraged by
       | adding a so-called Attribution-NonCommercial-ShareAlike 4.0
       | International (CC BY-NC-SA 4.0). Such a license can be
       | accompanied by a statement that mentions that commercial use may
       | be possible after obtaining permission from the principal
       | investigator. This would still allow for ethical commercial uses,
       | such as the development of novel drugs based on GWAS results.
       | 
       | 5. Disseminate GWAS findings to the general public: ...
       | 
       | 6. Track online discussion of results: Keep track of where
       | results are being discussed. ... "
        
         | Zak wrote:
         | In short, the author seems to be saying that knowledge of how
         | humans work should be restricted because it can be used for
         | harm.
         | 
         | I don't think I like that take. Attempts to restrict the spread
         | of knowledge usually don't work long-term, and often result in
         | bad actors working in secret. Some proposals relating to AI
         | recently have had similar traits.
        
         | justrealist wrote:
         | > 1. Include a bioethical expert in all stages of a GWAS study:
         | ...
         | 
         | Bio-ethics job-security strokes again. Provide literally 0
         | value or solutions other than spitting verbage over the
         | research and increasing the barrier to entry for small labs, so
         | only the giant labs can afford the bureaucracy.
         | 
         | No thanks!
        
       | tejtm wrote:
       | didn't find a non paywall link but here is some of one of the
       | authors other papers
       | 
       | https://pubmed.ncbi.nlm.nih.gov/?term=%22posthuma+d%22
       | 
       | As someone familiar with the the mechanics I have to say I have
       | no satisfactory answers.
        
         | Animats wrote:
         | Is "Danielle Posthuma" a pseudonym for a large language model?
        
           | jlg23 wrote:
           | https://en.wikipedia.org/wiki/Danielle_Posthuma
        
           | NHQ wrote:
           | Worse than that, a real Platform Muppet. The stooge name
           | signals "researching how to control post-sapien organ-
           | machines". The article signals conclusive evidence for
           | applications of the research.
        
       | beckingz wrote:
       | It's time to walk the line between targeted curative and
       | preventative therapies that reduce or mitigate severe suffering
       | and the dystopian gattica world where companies can reject you
       | based on genomics.
       | 
       | As per usual, we'll do it in that beautifully painful messy human
       | way.
        
       | haircomiccard wrote:
       | Missing an address of the methodological conceits. Well,
       | whitewashing them altogether via statements like "Robust
       | statistical associations". Heavy correlation can seem to suggest
       | a causal relationship which is actually masking a complex driver
       | which defies our (current) intuitive or even critical
       | understanding. If you can't explain the physiological state or
       | process which connects particular "genetic variants" with
       | particular "brain-related traits", there might not be a
       | connection.
        
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       (page generated 2023-05-22 23:01 UTC)