Communications Revolution Program #1-94 "Vanishing Privacy in the Information Age" Panelists: Richard Barton, Tom Mandel, Janlori Goldman, Sandra Starr, Eugene Schoenfeld Project Director and Host: Jude Thilman Director: John Rieger Executive Producer: Bari Scott Feature Producers: Vicki Voss, Gregg McVicar, Matt Binder Managing Editor: Alan Snitow Associate Producer: Carol Klinger (Beth Givens) How did they get my name? How did they get my number? How did they know I just moved? How did they know I just got married or had a baby? How did they know I just filed for bankruptcy or, heaven forbid, all of the above. Introduction by Jude Thilman The information superhighway promises to change the shape of work, school and leisure, but each new on-ramp comes with a caveat. You may have to give up some of your privacy to people who want information about you. In the next hour we'll take a look at who's looking at you, from your boss to your bank to your health insurance company. I'm Jude Thilman and this is "The Communications Revolution." What images come to mind when you think of privacy? A quiet, secluded place? A teenagers diary? A letter from a lover? You probably don't think of companies that make millions collecting and selling personal information about you. But in the electronic marketplace information about you is as easy to get as scanning your credit card. Your health records, driving records, credit and employment files are just numbers in a computer. Information to be bought, sold and manipulated as we learn in this report from Vicki Voss. Vicki Voss: Why do those people at Radio Shack always want to put my name and stuff in their computer? (Sound of employee talking to customer) Can I have the last four digits of your telephone number? And your name and address? Can I get your address please? VV: Why do they always ask for so many pieces of ID every time I write a check? (Sound of employees) Can I see you drivers license please? Can I get your ID please? Do have a drivers license or Master Card number? VV: And why do I put up with it? Many people in this country believe that privacy is one of those basic rights that should be part of any free society, yet these same people have many different ideas about what it means. For some, privacy is about being left alone to control you own thoughts, words and actions. In other words, freedom from government intrusion. Evan Hendricks: We have a cultural interest in privacy that goes back to the beginning of the country and not wanting the king's men to storm our houses. VV: Evan Hendricks is publisher of The Privacy Times in Washington, DC. He says Americans also view privacy in a more positive light. For them, it's about having quiet, solitude, a place to regroup. EH: You need to have privacy to enrich and safeguard your soul and the very essence about you, so I think it goes right down to your bones. VV: But most Americans only experience this kind of privacy behind closed doors. Here in a crowd it's different. Here we are seen by people, we interact with them, but we sometimes still feel the need to think our own thoughts and tell people only what we want them to know. And we take it for granted that we can do this. But technology may be redefining many of our notions about privacy. We can now do shopping and banking over the phone. We can use credit cards to get anything we want instantly. But for all this convenience we may be trading away more privacy than we realize. There's our quiet time. We've all had the experience of (phone rings). As I was saying, we've all had the experience of being interrupted at dinner by a phone call (phone rings). Hello? (Voice on the telephone) Hello. You have been chosen to be part of our survey on... VV: Only to get a computer on the other end. Out in public just try to really think about something. We're bombarded constantly by little ads everywhere - the doctor's office, on airplanes, on videos, right in your shopping cart. (Advertiser) Shoppers, who wants to be your Valentine? People's Drug of course. VV: And you can't even escape going to your computer. Commercial ads may soon greet you every time you turn it on. (Advertiser) Hi there. Saving money a problem? Idiot Investors can show you how to make the maximum use of your dollar every day. VV: This kind of intrusion may not seem like a big deal, but for privacy advocates it reflects a much more serious problem. Beth Givens: Loss of control over our personal information. VV: Beth Givens heads the Privacy Clearinghouse Project in San Diego. BG: How did they get my name? How did they get my number? How did they know I just moved? How did they know I just got married or had a baby? How did they know I just filed for bankruptcy or, heaven forbid, all of the above. VV: Well, remember Radio Shack? (Clerk) Can I see your drivers license please? VV: Now, this new California drivers license. It has this little magnetic strip on the back with the same information that's on the front of the card. The DMV put it there so its customers could get that information more quickly and easily. Its customers include of course law enforcement agencies and businesses? Jeff Johnson: Businesses are not intentional users of drivers licenses. They happen to use them as identification. VV: Jeff Johnson, co-chair of Computer Professionals for Social Responsibility. JJ: Now businesses will be able to swipe your card through a card reader and get this information about you which they can then put into their databases and sell to other businesses and why should they have access to that? VV: The marketing industry says it needs the information in order to learn more about people as consumers, to sell them more goods and services, but one of the problems is that information stored in a database travels to other databases and what if, along the way, somebody makes a mistake? Evan Hendricks of Privacy Times. Evan Hendricks: There was one man who was hired for a job in Washington, DC, pending a background check, and the background check turned up a court record which showed that he had a cocaine conviction and in fact he was fired for that but the person who really had the cocaine conviction was a person who had the same name but was a different man with a different age and a different middle initial. These cases have been multiplying over the last couple years as people are coming out of the woodwork saying, "you should hear what they did to me." (Clerk) Can I get your address please? VV: Mistakes and all, more and more people want this information. In fact, Janlori Goldman, who heads the ACLU's Project on Privacy and Technology says even the FBI is trying to get its hands on the marketing companies' records. Janlori Goldman: The FBI approached a very prominent information company that does a lot of marketing and asked if they could look at the files - that they wanted to use marketing files in doing background investigations that their information was considered current and detailed and that there were no legal restrictions on the FBI getting access to this. VV: For this reason privacy advocates say consumers should have more control over their own personal information and they want Congress to pass tougher laws to make it happen. So are they paranoid? Marketing companies want to see a balance between our right to privacy and their need for information, or is it their need for profit? And what choices do consumers have in all of this? We make tradeoffs to get things we want, sure, but should we be asked to trade something like privacy? For "The Communications Revolution," I'm Vicki Voss. ****** Host Jude Thilman: Trading away our privacy in the marketplace. I'm Jude Thilman and with me now are three experts on privacy in the electronic marketplace: Richard Barton is the senior vice president for government affairs with the Direct Marketing Association; Tom Mandel, former director of the Influential Values and Lifestyles Consumer Demographics Program at SRI; and Janlori Goldman, director of the ACLU's Project on Privacy and Technology. First question to you Richard Barton. I'm just wondering, have you ever been bothered by direct marketers yourself? Richard Barton: Oh sure. I think it depends on how you define bothered but there have been times when calls have been inconvenient. We just handle it by hanging up the phone or best by not answering the phone. I'm not sure that that should be the real question. The question is, is in fact your privacy being violated in a serious way through direct marketing and we do not believe it is. We think it's a good way to shop, a good way to contact people, a good way to work with people and, in fact, in many cases it protects your privacy more than it violates it. Host: Protects your privacy. Janlori Goldman, do you agree with that? Janlori Goldman: No I don't. I think that privacy is really about having some control, and having the phone ring in your home when you don't want it to ring is a real problem, especially when it's an unsolicited marketing call. I think what we need is, and we're moving towards this on the federal law, some kind of an opt-out list so that people who do not want to receive unsolicited marketing calls can put their name on a list and they will not be bothered. We may see some kind of an opt out list, not only for telemarketing but also for mail marketing as well. RB: Now I might point out, you already have an opt-out list for telemarketing and one for mail and Direct Marketing Association operates it. And at the end of the show I'd be glad to put the listeners in contact with that operation. JLG: What I'm talking about is a mandatory, federally mandated, opt-out list, not the voluntary list that the DMA operates currently. Host: Let's explain this for our listeners. An opt-out list meaning the consumer, as I understand it Richard, will have to take an affirmative action, in some way will have to get out there and work to get their names off of the lists. RB: The consumer would have to say I do not want to receive this mail or I do not want to receive a telephone call. Host: But if he or she says that to one agency how does that spread to all the companies that are now sharing these lists? Isn't that one of the problems, Janlori? JLG: That's exactly one of the problems. What we would like to see is a mandatory list that would have to be shared by all of the marketing interests so that before they could call you they would have to do a computerized check of the list and see if you were on the list. If you are on the list and they still call you there would then be a penalty. Host: So the big onus of responsibility would be put on the companies and not on individuals? RB: I also have to point out that the Federal Communications Commission has already proposed regulations which we are supporting now which does something like this except this is what we call a company specific list, when a company calls you and you say I don't want to receive a call, then you can't be called again and there are penalties involved in that. So we're moving in the direction that Janlori wants us to move in. The problem with a national list is that it is extremely difficult to put together and in fact it will take you off of all lists and the Equifax study, which I think you're going to talk about a little bit later, shows that people's problems are that they can't specify what they want to get and we're in favor of letting them specify that. Host: Tom Mandel, let's bring you into this discussion now. In your work at SRI are you helping companies figure out how to best use these databases for marketing and also protect people's privacy? Is that what you're doing? Tom Mandel: Well, we look at different ways of segmenting the consumer markets, understanding how different groups of people are interested in products and services. A lot of telemarketing, and in fact a lot of direct mail advertising, is really kind of a shotgun approach. People don't know very well whether the people they're calling are going to talk to or going to respond. Responses are very low. I think we'll probably move in a direction, because it makes sense to do so, in which increasingly telemarketers, direct mailers, are going to be just getting in touch with the people, that they already have a pretty good sense, they're going to be interested in what they're pitching, whether it be commercial product or collecting money for a political cause. A lot of the nuisance stuff will probably start fading away out of just the need of efficiency in doing these things. JLG: One of the important issues here which we haven't yet gotten to is, what is the source of the information that is being used by these marketing companies. So it's not just a question of whether people don't want to receive mail, or they don't want to get phone calls at home, but where are the marketing companies getting the information that they're using and putting these databases together. How are they developing such sophisticated profiles to do targeted mailings, targeted phone calls? How are they knowing so much about me as a consumer? What's happening is that they're not only using public record databases, what have been traditionally considered public record databases such as Department of Motor Vehicle records, which tell a great deal about someone - height, weight, age, sex, what kind of car they drive - but they're also using Census Track data, they're using in some situations other private sector databases that are being sold and shared, rented, exchanged, and so the real issue for the ACLU is to create laws and set up restrictions about how the information can be disclosed in the first place and what we are seeing some companies and some government agencies move toward this voluntarily now, but I think that's the real issue here. TM: It seems to me, the way people look at privacy there's a direct relationship between people whom we do business with, the people we talk with, the agencies and government we provide information to, to get services from. People understand that they have the information. It's when the indirect relationships start popping up. In other words, somebody you didn't want to give the information to has bought it or gotten it some other way and they show up at your door or on your telephone and want to know something about you or want to sell you something. And that's what seems to bother people more. It's the resale of data, rather than the direct use of it. JLG: The real issue is that there is such and unfair bargaining situation in most of these cases, where you're applying for a drivers license, or you're applying for public benefits such as AFDC, or you want to get a credit card, you want to apply for insurance. You don't have a real choice. The choice isn't meaningful about how much information to give and whether or not it's then resold. Host: Richard Barton, it seems that there are such potential dangers with the proliferation of personal data about people in this country and the possibility of people accessing it that we don't want to access it. Is it worth the trade-off just so you and people in your business can market some more commodities, sell more things, make more money. Is it worth making that trade-off? We're losing control of our... I feel like we're going to loose control of our own lives here. RB: Well I don't think we're going to loose control of our own lives. I think that what is coming down the pike, and what is already there in some places, is going to be some good, intelligent regulation which is going to control the kind of personal information. We think that just purely for marketing purposes, now lets lay that out, for selling things, that the use of general information of this nature is a benign use which is not harmful and it's not even a particular invasion of privacy. The other aspects we're talking about are about embarrassing or just uncomfortable or information you just don't want other people to know, I think we can handle through regulation without killing an industry which literally sells hundreds of billions of dollars of goods to a hundred million households in America every year. JLG: Jude, may I say something here? Host: Yes. JLG: About that. I don't want the Direct Marketing Association to make a decision about what information might be embarrassing to me, what information is private. I want to make that decision when I give information to somebody else. I don't know how many of you recall when Robert Bork was nominated to the Supreme Court but his, the video rental list that he had put together with he and his family at some local video rental company was disclosed to a reporter who did a big story about who is the real Robert Bork. After this disclosure, which really created quite a furor in Washington because every member of Congress was terrified that his or her video rental list would be available to reporters after this. Now every single video rental company has got to ask your permission before they can sell or disclose any video rental information to somebody else. So that's, while it's an extremely small example in terms of all the information we give, it's one of the strongest laws we have at the federal level because people were so shocked to think that the movies that they rent could be easily available. What we're trying to do is use that law as a precedent to create privacy protections in other areas. RB: Or sell through catalogues, which would mean if you buy a "Gone With The Wind" tape you have to be told how the information is going to be used before they can release it. And we think it's a good model. Host: Tom, did you want to get in on this? TM: I think it's a much more complicated game than that. Let me give you an example of the technology we know's coming along. The telephone companies - AT&T and the local companies - are eventually going to be offering your own personal telephone number. In fact I think there's a service already doing that. In the long run, everybody is going to have their own phone number... Host: ...Following you everywhere... TM: ...which is going to follow you everywhere. Really a great convenience. You can reach me... I have my own phone wherever I am to reach you. You can reach me wherever I am. But the other side of the coin is, it raises new questions of privacy. Do I really want my boss or my spouse to know where I am twenty-four hours a day, exactly where I am. Every wave of technology is going to raise a new set of questions that we're going to have to deal with as it comes along. It's not so easily cut and dry and I think some of the problems we've been talking about now aren't likely to go away because of technology. JLG: I couldn't agree more with Tom. I think that, and what Tom is raising is I think really an important point which is that we don't want to stop the development of new technology. What we want to do is make sure that when it's developed that it's developed with privacy controls. Host: And with that Janlori Goldman we're going to have to end. I want to thank you as well as Richard Barton and Tom Mandel for joining me. ****** Jude Thilman: By the way, if you have full Internet access you can join discussion of this topic on our IRC channel. The channel name is TRP. To get there, type IRC and return, then type forward, slash, join, space, pound sign, TRP. Be patient. We'll see you there. How closely does your boss check up on you at work. Are you being watched, wiretapped or monitored without even knowing it. Twenty-three million Americans are subject to on the job monitoring through their computers or some sort of electronic device that can track their location, count their key strokes or open their electronic mail. Is it the creeping shadow of corporate "Big Brotherism" or just proper vigilance by employers? Does our right to privacy follow us to work or do we check it at the gate. Gregg McVicar has this report. Joan More: When you walk into one of these offices, particularly in directory assistance where the call volumes are very intense, the atmosphere is very, very intense and very, very intimidating. Gregg McVicar: Joan More of the Communications Workers of America says operators are monitored so closely that they literally work themselves sick. Karen Nussbaum: If you had to call directory assistance the operator had twenty nine seconds to give you your answer. I hope you didn't have any questions or weren't confused because you would have cut into her (HANDLE?) time and that can cause her a problem in her evaluation, which could take place almost simultaneously. GM: Karen Nussbaum was formerly with 9 To 5, the National Association of Working Women, and is now with the U.S. Department of Labor. (Telephone operator) Please hold for the number. JM: People are watching their managers at all time, trying to determine whether they're monitoring them, whether they're looking at you, those kinds of things, in addition to the incredible stress of just doing this job - fourteen hundred calls a day. (Telephone operator) Thank you for calling PG&E customer service. All of our representatives are busy. Please hold and your call will be answered in the order received. Your call may be monitored for quality purposes. KN: If you chatted with her then she would be disciplined because her supervisor could have heard it as she was listening in, monitoring that phone call. Twenty-six million employees nationwide, from telephone operators to elevator mechanics, have their work tracked electronically. Ten million have their work evaluated and their pay set based on computer generated statistics. GM: Employee surveillance migrated from the highrise to the highway with the phrase 1-800 HOW AM I DRIVING? JM: We just think that's awful. It is just an insult to workers to be, to have a, it's like walking around with a sign on your back that says "Kick Me." (Teletrac video soundtrack) If you'd like to view alternate street names, touch this button. GM: Now commercial vehicles move in a vast electronic web, monitoring deliveries, engine RPMs, location. (Teletrac video soundtrack) The system can determine the location and movement of a subscriber's vehicle at any time, anywhere within the metropolitan area to within a hundred feet in just seconds. John Jessen: When you're driving down the freeway start looking at the semis. They have those big wind shields on the roof. If you kind of move around and look up under them some of them now have satellite dishes hidden under those wind shields. That dish is used for two things. Number one, if they get lost they can tap into the geo orbiting satellites and find out where they are, number one. Number two, their dispatchers can find them and see where they're at. And they're literally tracking the movements of these trucks on the highways. GM: Trucks aren't the only moving objects that can be tracked. Many employees now have plastic identification badges that get them in and out of secure areas. Employee movements and work patterns can be captured and analyzed by powerful software. JJ: I personally am not in favor of monitoring employees. GM: John Jessen, founder of Electronic Evidence Discovery of Seattle, Washington. JJ: We went and talked to a company who was, had some litigation they were anticipating starting against an employee that they thought was steeling from them and they said, "we want you to look throughout electronic records and document where this person was at all times." I said, well, that's interesting, did this person use different terminals? They said, "no, we have ways of doing it." Well, they made their employees wear these electronic badges around their necks and they had literally buried, hidden in the walls, they had sensors that you couldn't see and as people walked down the hallway it was recording where they were. And so this company was literally keeping electronic tabs on people as they went around the organization. I asked one question, do they know this. "No." And we declined to work on that. GM: Jessen' team is expert at unearthing electronic data to be used as evidence in a court of law. Through a legal investigating process known as "Discovery" Jessen helps law firms unearth damaging documents that may have been hidden, modified, erased or password protected. JJ: Unfortunately people put information in electronic mail when they're typing that they wouldn't dream of putting in official, quote/unquote, official paper document and yet an e-mail system is nothing more than a word processor, and that material is being captured, it's being backed up, it's being put into a nice humidity and temperature controlled vault somewhere and just waiting for someone like me to come sit down and read through it. Take that material, perhaps out of context, and present it to a jury and it will be used against them. GM: It used to be that a piece of paper you didn't want to fall into the wrong hands got crumpled up and tossed out, maybe even shredded. Now, corporate e-mail systems are buzzing with sensitive memos, juicy gossip, idle boasting, speculation, criticisms of the boss and co-workers and thoughtless jokes or comments. Even if this material never ends up in court your boss or coworkers might easily get a hold of it because thanks to ever more efficient computer network technology it's probably still lurking somewhere on a tiny little backup tape. JJ: All they're doing is trying to get more data onto a smaller space. But when you can get more data onto a smaller space you're going to keep more data. You're going to keep a thousand tapes of information, but (sounds like "you're not" CHECK) going to keep it in you desk drawer. GM: Electronic data is pernicious and long lasting, yet a clumsy attempt to alter or destroy an electronic document can also get you into deep trouble if the act of destruction looks like an admission of guilt. For an example, Mr. Jessen says we need look no further than President Nixon's Watergate tapes. (WATERGATE TAPE) (Question #1) What did the president know and when did he know it? (Question #2) Mr. Butterfield, are you aware of the installation of any listening devices in the oval office of the president. (Butterfield) I was aware of listening devices, yes sir. JJ: I often use the eighteen minute gap. That's what sunk that presidency, right? It wasn't so much the content of the tapes it was the fact there was a missing gap. (WATERGATE TAPE) (Nixon) Therefore, I shall resign the presidency effective at noon tomorrow. GM: For "The Communications Revolution," this is Gregg McVicar. ****** Executive Producer Bari Scott: This edition of "The Communications Revolution" was originally broadcast at an earlier date. The phone calls and the discussion that follow are prerecorded. You can receive a free resource list for today's program by sending a stamped, self-addressed envelope to Pacifica Radio Archive, P. O. Box 8092, Universal City, CA 91608. Ask for program #1-94. This is "The Communications Revolution." ****** Bari Scott: This is "The Communications Revolution." Robert Ellis Smith: The ancient Greeks knew, as others did, that for medical care to work properly you have to be totally candid to your doctor, but now, instead of a one on one relationship, there is a triangle among the provider, the insurance company and your employer and medical information about us flows throughout that triangle without our participation. Introduction by Jude Thilman Your health history - the drugs you've taken, visits to the psychiatrist, whether you've had an abortion. Now that your health records will be on a computer who will know the most intimate details of your life? I'm Jude Thilman, "Health Care and Privacy" in this half hour of "The Communications Revolution." Your health record is a matter between you and your doctor, right? Think again. Your health record is seen by employers, schools, insurance and pharmaceutical companies, the criminal justice system, telemarketing groups. What do they do with your personal health information? Will health care reform bring more or less privacy now that everything will be on computers. We begin with this report from Matt Binder. (Doctor reciting Hippocratic oath) I swear by Apollo physician, by Aesculapius, by and by all the gods and goddesses that I will carry out this oath. Into whatsoever houses I enter, I will enter to help the sick and whatsoever I shall hear or see in the course of my profession, if it be what should not be published abroad, I will never divulge, holding such things to be holy secrets. Matt Binder: Since the time of ancient Greece doctors have understood the sensitive nature of their profession and have recited this, the Hippocratic oath, as a promise of confidentiality. Until recently, physicians have kept the secrets of their patients in their heads or on pieces of paper in a file. And they've been the gate keepers for others wanting to see this extremely private information. But now, for some very good reasons. That's all beginning to change. (Doctor talking to patient) Let me take a look at it. Sometimes the medication makes it hurt more and you get some reaction to it. MB: At the dialysis unit at El Camino Hospital in Mountain View, California, Doctor George Ting uses a computer to keep records, order tests and prescribe drugs for his patients. He says the computer saved him hours of tedious work each week and can even save lives. George Ting: For instance, if you're ordering a medication on a patient it automatically gives you the most common prescribing doses and frequency. It does make it less likely that you're going to make some major mistake - prescribe ten times his usual amount. Nurse Judy Holt: And it was discontinued totally? Which one? MB: Nurse Judy Holt is an even stronger proponent of the computer. When new doctors come to the hospital and resist using the computer system, she and other nurses pressure them to get with the program. JH: We're all anxious to help them learn how to use the computer because it saves us time. It saves the possibility of transcription errors. It saves... I can't read this doctor's writing, what does this say and the three of us have looked at it and can't figure it out. We've got to call him and find him and it delays... MB: But the computerization of medical records has a down side. Amassing huge databases of sensitive information could open the door to privacy invasions on a scale unimaginable with paper files. It's already happening. Insurance companies and direct marketers, aided by computers all linked together by phone lines, are finding ways to get a hold of medical data and they're selling and trading it across fast networks. (Someone answers door) Hello. (Kids) Trick or treat! MB: It's Halloween night at the home of Mary Rose Taylor in Springfield, Massachusetts. Taylor recently found out how easy it is to get trapped in one of these data webs. She applied for health insurance but was rejected because of a computer error at the Medical Information Bureau, or MIB, a huge medical database kept by insurance companies. Mary Rose Taylor: They had my name and a urinalysis that wasn't mine and they refused to think that there was any kind of mistake or mix up and I went without insurance for a year and a half and had to literally go to my state representative, the insurance commissioner, just to have it corrected. MB: Taylor told the MIB and her insurance company that she'd had only a blood test, not a urine test, and therefore the abnormal urinalysis couldn't possibly be hers. But the insurance company insisted that she gave a urine sample, that it showed there was something wrong with her, but they wouldn't tell her what it was. MRT: At one point the risk manager had me in tears. He was very nasty, really. In his words, what he said to me at one point was, computers don't make mistakes. I said I agree, but the people that feed the computer do. (Anonymous doctor from southern California) I'm paying 15,000 a year for disability - personal disability and medical insurance. That seems like a whole heck of a lot of money. MB: Another victim of a Medical Information Bureau error is this doctor from southern California who wants to remain anonymous. When she asked her insurance company why her rates were so high they told her that her MIB file showed that she had Alzheimer's disease and a heart condition. Anonymous doctor: Here I am, a physician who works sixteen hours a day, who's never been in the hospital has Alzheimer's disease and a heart attack? That doesn't make sense. I don't think that computers and the people who put the information into the computer are advanced enough to pass such control over our lives. MB: I'm now standing outside the entrance to MIB, Incorporated in Westwood, Massachusetts. I've been trying for over two months to get an interview with the president of the company, Neil Day. He says he doesn't have the time and no one else can speak for the company. But he did admit, during a telephone conversation we had, that four percent of the 16 million computerized medical records in this building do have errors in them. Robert Ellis Smith: I don't think MIB really needs the good will of consumers as does a retail store. They don't work for us. In many ways, the less known about MIB the better perhaps for the insurance business. MB: Robert Ellis Smith is the editor of Privacy Journal in Providence, Rhode Island. RES: The ancient Greeks knew, as others did, that for medical care to work properly you have to be totally candid to your doctor, but now, instead of a one on one relationship, there is a triangle among the provider, the insurance company and your employer and medical information about us flows throughout that triangle without our participation, and that's the crisis we're in right now. MB: After the insurers and employers it's pharmaceutical companies and direct marketers that are the most avid compilers of medical information. Some of these companies have toll free telephone numbers you can call to get free samples of their products. What they don't tell you when you call is that your phone number and often your name and address automatically pops up on their computer screens and your personal problem, whether it be allergies or hemorrhoids, goes right into their database. Again, the companies that run these databases refuse to talk about them. Joe Apter: What subjects or areas can we be helpful on? MB: One man who's not shy at all about his database snooping is Joe Apter, president of Telephonic-Info, Incorporated of St. Petersburg, Florida. His company actually has a price list of information you can obtain. Forty-nine dollars for someone's social security number. Two hundred and ninety-nine dollars will get you something called a "medical profile" that Apter wouldn't elaborate on, but which he says comes from legal sources. JA: You and I are leaving threads as we go around and we find these threads and we weave them together to get a picture. There are people out there providing medical records on an illegal basis. We don't do that. (Doctor reciting Hippocratic oath) And whatsoever I shall see or hear in the course of my profession, if it be what should not be published abroad I will never divulge, holding such things to be holy secrets. RES: I think the answer is for patients to insist that doctors go back to that ancient ethical standard and insist that they not disclose information about them without their informed consent. The concept of informed consent about release of medical information seems to have gotten lost in the modern age. (Doctor reciting oath) Now if I carry out this oath and break it not, may I gain forever reputation among all men for my life and for my art. But if I transgress it and forswear myself may the opposite befall me. MB: I'm Matt Binder for "The Communications Revolution." ****** Host Jude Thilman: Privacy versus public policy: The fear is that in order to streamline health care reform by computerizing records we may see many more stories of people victimized by faulty or easily accessible records. With me once again is Janlori Goldman of the American Civil Liberties Union Project on Privacy and Technology. Also joining me is Sandra Starr, an epidemiologist at the Health Research Educational Trust in new Jersey. She's the architect of an electronic perinatal information network for the state of New Jersey. And Doctor Eugene Schoenfeld, a member of the panel of court appointed psychiatrists for the superior court of Alameda County, California. Janlori, first to you. What's wrong with the widespread collection and dissemination of information from our medical records? Janlori Goldman: Well, one of the main problems is that most people don't even know that their information is used in ways without their knowledge and without their consent. That's probably the most egregious abuse. And so when you go to the doctor you assume that the doctor will maintain confidentiality but the doctor then will send the information to an insurance company who will then send it to MIB. The insurance company might make it available to your employer, to other insurance companies. They might make it available to a marketing company. All of this happens without you ever knowing about it. Host: Doctor Schoenfeld, as a psychiatrist you're dealing with very sensitive information. Have you seen situations where patients were hurt, perhaps much later in their lives, by information - perhaps early drug use, something like like. Eugene Schoenfeld: One of the problems is access to patient records. In order to obtain insurance coverage the patient gives access to the records to the insurance company. They're usually people who, upon entering the doctor's office, are signing various forms and they may not notice that they've done that, but they have usually signed a consent to allow the insurance company access to the records. And in fact in order to get payment for a treatment a diagnosis is given. Host: You have to give a diagnosis and in fact... ES: ... You have to give some sort of diagnosis. Sometimes, it depends on the practitioner, thinking of myself, sometimes I will use a different diagnosis, it's not defrauding the insurance company - the payment would be the same, whatever it was - but I choose often a diagnosis, say, of anxiety if I'm treating someone who doesn't want to put in his record that he has chemical dependency problems. Host: That's going to be difficult then to use that data for legitimate medical purposes later, say, when epidemiologists gather the data to do research on patterns of disease, for example. ES: Well, we don't have to make everything so easy for epidemiologists. I have training in public health. I have a master's degree in public health and I'm well aware of the usefulness of statistics, but I think there must be other means than violating the privacy of patients. Host: Do you yourself keep your patients' records on computer. ES: No, I don't. Host: You use a paper-based system? ES: I use paper and pencil, yes. Host: Sandra Starr, as someone who is an advocate of computerization how are you going to get health care providers to join in in the computerization of health records? Sandra Starr: When we're designing information systems and we look at the providers, and the providers I'm working with in this case are nurses, we're trying to design systems that help them do their work better. In the case of physicians and medical records, and let me take the case that I know most about, is often physicians come to a delivery room with a little index card, which is all they know about their patient when they're about to do a delivery. If, in fact, there is a better source of information that's more readily accessible to the physician and helps the nurses actually provide better care, for example, in an obstetrical situation, in fact, they will use it. Whether the physician chooses to use that, that's another question. Host: Sandra Starr, we've been talking about a lot of abuses. You can have anybody walk in with a little index card and a lab coat on and pass themselves off as a doctor and say let me see a broader record, let me look at the computer. In fact, one journalist disguised himself as a doctor, entered a hospital in New York and obtained an actress's medical record and later published that she'd been treated for a sexually transmitted disease. Now if the health records are on computers isn't that going to happen anyway. SS: Actually, computers provide more security than the paper-based medical record. ES: Paper-based record is available only in the physician's office. How can electronic record keeping, which is seen and meant to be seen by many, be more private than a single physician's records? Host: Sandra Starr. SS: No one can get into your database without pass codes and security devices and indeed you can have levels of security and very sophisticated levels of security, including simple ones like PINs, pass codes, encryptions. There are ways to protecting security that involve little "smart cards" that change passwords periodically and you have to have the right one to match the computer. Depending on the social situation and how much privacy matters, and confidentiality matters, you can design systems to, in fact, protect records much more fully than they are protected today. JLG: You might be able to protect records more fully in certain instances but no system will ever protect records 100 percent. The example you gave of the journalist, in an electronic records situation, the journalist, if he or she is also a clever computer whiz, might not ever have to walk into the hospital and pose as anything. Might be able to log on, again, if they're clever enough. SS: Let me give an example of, in fact, at a big medical school here in New York City, where a physician did log on to the information system and discovered that a nurse was pregnant and broadcast that information. They were able just to look at their log book of who logged on, who had the right to that information, realized that this was an individual that didn't have, wasn't responsible for her care, and this individual, this physician, was severely punished and penalized by the hospital for in fact looking at information that he was not entitled to. The paper-based system, you can't even track that. Host: Janlori Goldman, how do we balance society's needs for information versus individual privacy, which I know is a passion of yours. Let me cite another example. There was a school bus driver who made some curious remarks on the bus. Parents objected to these remarks. A school superintendent said that, quote, as long as the driver followed his medical regimen there was little likelihood that his disorder would interfere with his work, end quote. The parents insisted on seeing the driver's complete medical record and a state supreme court ruled that they were entitled to that information. Now what about the driver's rights to privacy and the parents' rights? I mean, what if the guy had epilepsy or he was a drunk driver, or something like that? JLG: Well, the fact of the matter is it sounds like the superintendent had information about the driver. Someone who is severely ill in that kind of a situation should not be a school bus driver and I think that there a certain instances where we would all, as a society, agree that information like that is relevant to the job. It doesn't mean that an entire community should have it. It just means that, as we look at who should be able to drive, that we should also be able to say that people with certain kinds of illnesses or impairments should not be able to be a school bus driver. But the real issue here is that we are too quick to say let's balance society's interests in the information against the individual's right to privacy. We do far too much balancing as it is. I think people have the right to own the information about themselves - the medical information - they have the right to decide who should see it, under what circumstances. They should be able to control the information about themselves. And I think that we are hopeful that that is where we're going in the health care reform area. ES: But how to ensure that when the insurance companies have the right to access the patients' records and each time a claim is made a diagnosis is submitted. Host: Sandra Starr. SS: Let me just say that Doctor Schoenfeld's question is predicated on an insurance system that in fact has an incentive to know what your illness is and because they want to not insure you if you are at risk of getting ill, and they don't want to pay for you, and that's the current insurance system, and that's the current organization of medical care. Host: And the current proposed reform is not going to eliminate that insurance system. SS: The current reform completely changes the rules of the insurance system. A health plan or an insurance company must accept all takers. The enrollment is not done by the insurance company. It's done by the health alliances, which are completely indifferent to your preexisting condition. That's by law. It's in there in the health security act. JLG: I should say that as long as there are very strict limitations on the insurance industry's use of the information and they only get the information that's directly relevant to that claim, I don't have any problem with them getting it. The problem is, what the insurance company does with it, once they have it, that there are no restrictions on other kinds of dissemination and they get far too much information as Sandra said because their primary goal is to not insure you. Host: We might note that Merck Pharmaceutical company just bought Medco Pharmacy chain and they admitted they wanted Medco's database of consumer purchases of prescription drugs, so we're talking about marketing here, Janlori, and obviously that's a problem we haven't even begun to scratch the surface of. JLG: Right, that is, in some ways, the most obvious problem because some people will say, I understand the insurance companies' need for it. Some people might even agree that MIB should have access as a clearinghouse for other insurance companies, although again, when we eliminate preexisting conditions, limitations, MIB may be out of business. But I think that for marketing purposes it's absolutely clear this information should not be made available. Host: We'd like to hear from our listeners right now. We're discussing privacy and computerized health records with epidemiologist Sandra Starr, Janlori Goldman of the American Civil Liberties Union and Doctor Eugene Schoenfeld, a psychiatrist who also wrote the syndicated newspaper column "Doctor Hippocrates." If you'd like to get in touch with us by e-mail to give us your comments and opinions our address is KPFA @ well.com. Be sure to put the words "Communications Revolution" in the subject field. Right now we have John from Rochester, New York on the phone. John, welcome to "The Communications Revolution." Caller #1: Yes. Host: Go ahead John, you have a question? Caller #1: I didn't have a question but I did have a comment about the doctors sharing information with the computer networks. I feel it's a complete invasion of privacy and I think you need more than just informed consent. I think that since this is almost inevitable and will always be there, insurance companies will always be able to obtain information, I think they will, that somewhere you have to incorporate safety measures because otherwise it's just another form of a Big Brother and I also liken it to junk mail. You don't want it, you try to fight it and yet you still get it. I feel that the computer is invasive to my privacy, but it needs more than just informed consent on my part. Host: Thank you, John. JLG: May I respond to that? Host: Go ahead. JLG: I think the caller hit on one of the most difficult issues in the privacy arena - the consent issue - and I am just arriving now at I think a new approach. The consent issue tends to be how we look at privacy issues. Well, the information shouldn't be disclosed unless we have the individual's consent. But especially in the medical records area, consent is often coerced. It's not meaningful. The bargaining, the parties here are not really entering into an equal bargain. The question is, give me your consent, otherwise I can't give you care. Or I won't give you insurance, or I won't give you a job. People do not choose to withhold consent. They give their consent for anything in order to get that job, or get that medical care. So we are now looking at a federal bill which will create absolute barriers to disclosure and will not even allow consent to be an issue. Host: In San Francisco, we have Michael on the line. Welcome, Michael, to the show. Caller #2: I was doing intake at the emergency room at UCSF and of necessity I had to find out the person's name and date of birth and religious preference and then I had to find out who to notify in an emergency and I also had to find out what, if any, insurance they had before I could make up a little plastic card that would then be printed on every single piece of paper that would go to the nurses and the doctors as quickly as possible so that they could get blood tests out, they could get x-rays done, and all this had to be billed to somebody. How can we be sure that people who take down this information, such as myself or my - and I use the word advisedly - accomplices, will be the kind of people who will not misuse this information? Is there any way to do that? Host: Thank you, Michael, for your call. Any response to that? SS: Let me just say that the health security card is part of this... Clinton's proposal... addresses these basic pieces of information. JLG: Let me just jump in here for a second. I am very uncomfortable with having the Clinton health care plan touted as an answer to the privacy concerns. We worked very closely with the Clinton task force on health care reform and fortunately there's a great deal of good language in the bill dealing with privacy. None of it is enforceable. None of it. It sets out principles that should be followed on privacy. It creates a health care board which is to draft legislation to be delivered to Congress in three years so the Clinton folks envision a health care reform system without enforceable privacy safeguards in place. It is ludicrous. The health security card - it's not clear what identification will be used. The act does not specify. There are real, real limitations in the law, and so we are pushing to have a separate piece of legislation drafted which will be enforceable before an electronic data network is created. Host: Mary from San Diego has been very patient. Mary, you're on "The Communications Revolution." Caller #3: Hi. I read I think a couple years ago in The New York Times about a company called the "Physicians Computer Network" and apparently what they do is get doctors to cooperate with them and they provide computer equipment and then, in the hours that the clinic is not open, then the company connects to those computers and takes out the records having to do with, I guess, the uses of medications and my understanding is the patients have no idea that the doctors are letting their patients' information be used that way. I guess, and also, I guess my understanding is that it's used for direct marketing - the marketing of pharmaceuticals - and I'm wondering what you would have to say about this "Physicians Computer Network." Host: Thank you very much for your call, Mary. Yes, the "Physicians Computer Network," I guess, for a nominal fee of 3,000 dollars will set up several computers, some software, all in exchange for access to supposedly anonymous information in a doctor's database and they'll use or sell that data. Doctor Schoenfeld, are you ever approached... I want to point to the collusion between doctors and pharmaceutical companies and marketers of this information. Are you ever approached by these companies and offered free computers in exchange for data on your patients? ES: I get mailings such as you described, fairly often. Host: And what do you think of that practice? ES: Well, it's one thing to try to collect data anonymously. But I fear that the collection of that data anonymously also means the collection of the patients' names. JLG: Another way that information is often gathered for marketing purposes is you'll see these 800 numbers that pharmaceutical companies will put up and say, if you have asthma and want information call this 800 number. They're not set up primarily to give information to asthmatics. They're set up to get information, and they will use it to market to those people, market some product to them. Host: Information such as you name, phone number, that sort of thing. JLG: Other kinds of illnesses. What medication they're currently taking. There was a... Johnson & Johnson set one up recently to sell bladder control products and when this was made public in a congressional hearing they immediately then pulled back and said, we're not going to do that anymore. Host: We have a caller from Salt Lake City. Jane, you're on the air. Caller #4: Hi. I have two comments. One of them is that I was turned down for major medical at the time of my divorce 20 years ago because I had acknowledged having been treated for depression. When I moved to Salt Lake City I applied for major medical, it was already in my medical information bureau and that took care of that. Item number two, I sent my son his jumping juvenile insurance policy when he became a father and he decided to shop around and see if he could get a better deal. In answering the questions he said, yes, he had smoked a joint or two when he was a adolescent - he's now in his forties - he said, I figured, mom, that everybody in my generation had smoked a joint, so I said yes I used drugs. He is now on an assigned list type of insurance policy. I think it's outrageous. Host: Thank you for your call, Jane. Doctor Schoenfeld. ES: That's another problem. When there are urine drug screens which are done for one reason or another, this becomes a part of the patient's record. If it's done electronically, it's an electronic record. Often what I do, when there's an elective urine drug test, I'll just use some other name. For example, if someone is about to have a pre-employment physical exam which requires a drug test often someone will come to me and say, gee, a week or two ago I had a few hits from a joint, what shall I do? And so, do a urine drug test under someone else's name, say Nancy Reagan or Hillary Clinton. Host: But how will that work for the employment. You've still got to turn that record over to the potential employer. ES: No, because this is done before the employer's urine drug screen. This is just to make sure that the person has a drug screen which shows no elicit substances. I also tell the patients, when they know they're going to have a pre-employment physical with a drug screen I say, well, if you know this is coming up and you still can't pass it, you've got a drug problem. SS: What is really going on is morally outrageous that a person who's sick and wants to buy insurance cannot buy insurance in our current system, and a lot of the data networks that you're talking about, a lot of the collection of the information, exists only to screen out people from the health insurance system and I think that we really have to concentrate on this point. That this is a lot of what we're trying... that we're talking about and this is one of the reasons we have so many objections to it. It is really outrageous. Host: We only have about a minute left but let me ask this. In spite of all the discussion of the pros and cons of the computerization of medical records, what can those of us who really don't want to be part of this new health record data loop, what can we do besides always go to a new doctor and pay cash? Is this inevitable? JLG: Well, you hit on the two solutions that I often suggest to people if they really don't want to participate. I don't think either of those are good solutions. What we need to do is develop a public policy that lets everyone participate, that gives everyone access to health care and that doesn't disadvantage people by having them loose their privacy as a condition for receiving health care. Host: Sandra Starr? SS: I couldn't have said it better myself. Absolutely, I agree with her and the technology here is just a tool. How we design these systems depends on what our social priorities are and if our social priorities is not using insurance to screen people out of the system and keep people away but to be inclusive and to give people rights to medical care then we also have to maintain their right to privacy. Host: Rights to privacy and rights to medical care, certainly important subjects that we'll come back around to again. Thanks Sandra Starr, we are at the end of our hour. Thanks to you also Janlori Goldman and Doctor Eugene Schoenfeld, and I thank all of you who called into the program. Be sure to join us next time. I'm Jude Thilman for "The Communications Revolution." ****** .