Focus 580; Future Perfect: Confronting Decisions about Genetics

In this our focus 580 will be returning to a topic that we have discussed in the past and that is contemporary genetic technology and the many questions it raises. On past programs we've talked about this from a scientific sort of perspective. We've talked about some of the ethical issues raised and this morning we're going to talk about some of the legal issues that are raised by this technology and our guest for the show is one of the country's leading authorities on genetics law and her name is Lori Andrews. She's professor of law at Chicago-Kent College of Law. She's also director of the Institute for Science Law and Technology and senior scholar at the Center for clinical medical ethics at the University of Chicago. She's done a lot of writing and speaking on this subject. She's the author of nine books including one called the clone age which was published last year and her newest That will be talking a bit about this morning is tie and that's titled Future Perfect confronting decisions about genetics. It's published by the Columbia University Press and addition to her

teaching and speaking and writing. She has been an advisor on genetic and reproductive technology to many national bodies including the Congress the World Health Organization the National Institutes of Health the Centers for Disease Control. She also served as chair of the Federal Working Group on ethical legal and social implications of the Human Genome Project and she's talking with us this morning by telephone. And as we talk you're certainly welcome to call you have questions all we ask of people. We're calling it is just that try to be brief so we can keep things moving along. But anyone is welcome to call here in Champaign-Urbana 3 3 3 9 4 5 5. We also have a toll free line good anywhere that you can hear us and that is 800 to 2 2 9 4 5 5. Again if you match the numbers with the letters on the phone you get w while also 3 3 3 WRAL toll free 800 1:58 WLM. Professor Andrew hello. Hi I'm delighted to be here.

Well we appreciate you giving us your time. Does anybody know exactly how much genetic testing now is going on in the United States. Well a lot because across the country is four million babies a year are tested in genetic testing programs run by the Department of Public Health for newborn screening. A very large percentage of pregnancies now undergo some sort of genetic test about the baby. But but we don't know the extent of it because employers insurers others may be testing us sometimes without our knowledge or consent. Well that goes to a very basic question that he has. Is your consent required for you to force someone to do genetic testing of you not in a one way or in Indiana a few states a handful about a half dozen have laws that say written consent is necessary before you do a DNA test on someone. But in other states such as our own we're at risk of having genetic

information brought up about ourselves that we may not have intended. Almost all of us have DNA on file if you've had a cholesterol test at a hospital. You left here at a barber shop and somebody has potential access to your DNA in fact the stamp that we've picked or the envelopes make to you. Post up the biggest DNA bank in the world and the FBI has sometimes used that to track down genetic profiles of people including one of the World Trade Center bombers. Well that I guess then begs another question and that is just how much control we as individuals have over who has access to. I guess to the raw material first of all and then to information even if for example I decide that I want to know the possibility that I might develop a particular kind of disease. And I go when I have a genetic test done screening for that specific thing so that I will know what sort of

controlled Do I have over that information. Well when we think about it sometimes it sounds good if I say you can't be tested without your consent. But then you apply for insurance and they ask you for your consent if you want to be insured you have to turn that information over. In Illinois we do have a law that protects people against certain type forms of discrimination and surance based on the results of genetic tests. But it doesn't go far enough because it doesn't it for example. It doesn't prevent your discrimination based on. A family history of that particular disease or other ways that the insurance company can get information without doing a straightforward genetic test. So in answer to your question I mean we have very little control on the basic issue of the of DNA.

DNA has become the raw material for products like gene therapies and people don't have very much control over DNA once it's outside their body there is a famous case in California for example where a doctor patented the cell line made out of his teeth. It's a tissue patent that the genes from the patient and the patients sued and said You've stolen my property. You kept me coming back for seven years thinking I was sick when actually you were negotiating these agreements with a biotech company and filing a patent and the California Supreme Court said that the bodily tissue the DNA could be the doctor's property but not the patient. Now there is something that I just I'm afraid I just don't understand. I don't understand the logic there. How how it is that I guess in the first place I'm not quite sure I understand the logic of patenting something that should either be my property say See if it's my DNA or something that should be in a sense be in the world's public domain. The idea that you could say so you go out and you discover a plant that has medicinal use and

you decide that you're going to patent that. I guess I don't really quite understand the legal logic behind saying that one could do such a thing her and in fact when scientists began the Human Genome Project a decade ago with three billion dollars worth of federal money they had no expectation they'd actually own the genes. And in fact if you look at the scientific press around that time they thought that idea was ludicrous because they thought it would lead to scientists putting commercial interest over scientific ones maybe. Sorting patients samples and not sharing it with other scientists in order to be the first to find a lucrative gene. So I mean you're right to question that I mean in our patent law we reward inventors by giving them a 20 year monopoly that forbids anybody else from using their invention. But you're not supposed to be able to patent a product of nature or a formula like equals MC squared. And genes do seem to be both. And so what happens is for example a company owns a

patent on the breast cancer gene on one of the breast cancer genes the BRCA 1. They actually can prevent my doctor from looking in my body to see if I have that gene they can prevent other companies from trying to find a cure or market a cure all under the name of intellectual property right. Well that's I mean not to put too fine a point on this but this seems to me from my perspective as a layperson to be clearly wrong headed. Is there some possibility you think that that kind of decision might be revisited or are we stuck with it. No I don't think we're stuck with I think we're just now beginning to see the bad parts of it. For example I know of an individual who raise a lot of money to fund autism research and he tried to give it away to scientists but he found that they couldn't take it because one researcher who had a lot of tissue samples from patients with autism was not sharing his information or his

samples because he want to be the first to find the gene. So what that funder did was create a nonprofit tissue bank where he went around them to patients and families with autism and got samples and now give them to any reputable researcher so he's found a. Practical approach around it. But I think we could also have a legislative approach around it. Often the patent office gives out two broad patent when Samuel Morris was doing his research he went to the patent office and got a patent on all use of electromagnetic waves. And the U.S. Supreme Court said that's ridiculous you can only patent your particular invention of the telegraph. And so I think that it could be challenged in court and we could. Say it's not fair or it's not appropriate it's not even right under the patent law to grant someone a patent on all uses of chains where you can't get a test or develop a therapy with out

the permission and high payment to the patent owner. So courts would be one way and then we could ask Congress to intervene. They did something fascinating just a few years ago. It became common for doctors certain doctors to patent surgical procedures. They would think about what that's like. You get appendicitis. Your doctor needs to give you an appendectomy but someone has a patent on that. Maybe a doctor who doesn't want to pay a high licensing fee so the doctor might use a less safe technique where maybe the original. Holder says no I want to be the only doctor to do that. And it was clearly getting in the way of medical diagnostics and treatment just as I see gene patents getting in the way of medical diagnostics and the development of treatments and so Congress went in 96 and said we're going to create an exception where doctors can use patented medical or surgical techniques without paying the patent royalty. And I think that law should be tweaked. To actually

exempt from patent liability doctors and laboratories that look at our genes. Our guest in this hour focused 580 Lori Andrews is professor of law at Chicago-Kent College of Law and has done a lot of writing in speaking on the legal aspects of genetic science and is the author of a newly published book if you're interested in reading about some of these issues you can look for the book it's titled Future Perfect confronting decisions about genetics and it's published by Columbia University Press. And we are here open to your questions if you like call in 3 3 3 9 4 5 5 we also have toll free line that's good anywhere that you can hear us and that he's 800 to 2 2 9 4 5 5. Is this simply a case where I think we've probably seen this happen before that technology has developed so quickly that it has run ahead of our ability or inclination to think about its implication.

I think one of the problems if we rely on the law to govern the behavior of individuals in any situation including technology and the law looks backward. You know we now have the space shuttle and we have cases about it we look at earlier cases having to do with horse and buggies when we have computer programs we look at earlier cases having to do with books and for some of these issues that I'm seeing in the genetics realm there are no good precedents I mean where do you look in the law to find things like whether a parent should be able to put genes in a human embryo to give their children. It has meant like making them taller. And so in part it's a problem in dialogue. I mean scientists look ahead if you took a lawyer from a hundred years ago put him in a modern courtroom he'd be perfectly fine and it would be he could be a scientist from a hundred years ago in a gene sequencing lab or an in-vitro lab he would know less of what's going on than a passer by on the street. And so I think we need to as a society sort of get more

involved in thinking ahead in this area. I think that that's. If if the past is any indication it's that's difficult because people feel i think ill equipped to discuss these issues and often the way that the media cover them at least initially is it's kind of a gee whiz sort of approach where mostly we talk about just how wonderful it is before we start to get around to saying well wait a minute. Well let's let's think about this a little bit and we do seem to have this tendency to adopt technologies and then only later start to look at their real world implications and ask the question should we have in fact have adopted them in the first place. Yes. I mean you're so right and I think that we read every day about the great benefits that can come from the Human Genome Project and I recall reading an article from The Journal the American Medical Association in which they claim there is a gene predisposing to alcoholism that was later retracted it turned out

not to be so. But in the two weeks after the article came out there were 140 different reports in the media and they said it was in magazines about what a great thing it was to have discovered a gene predisposed to alcoholism. None of them said what we would do with it. But I have a 13 year old son while I lock up the liquor cabinet if he had that genetic mutation would I prevent him from going to a party college would I. Would his employer later not promote him to a bank vice president if they knew he had a gene for alcoholism. Or you know with the National Endowment for the Humanities actually give him a grant on the idea that a lot of successful writers and artists were alcoholics. I think that it shows that you know initial embracing excitement of any genetic finding but not really thinking through what is it that we're getting out of it as a society and if we're in a stage where you can't if they treat the alcoholism will be used against people to know their genetic profile.

Well I suppose one might at least try to make the case it's a it's a well say we are talking about something like alcoholism if we could tell someone that they would have the tendency to become alcohol dependent. At the very least then they could take that information and do what they would like with and one thing that they might do is decide not to draw. Think that it may that may have some benefit to that person but in many cases here we're also talking about the ability to. We may not have the ability to tell people that they have the tendency to develop particular kinds of diseases where we have no avenues of treatment. So now you know what's the point if what if we tell somebody now that they they're going to develop Alzheimer's disease. What's the point of no of telling them that and then knowing that if we can't do anything about it. Yeah and so that every time they forget their car keys which so many of us do just have a routine basis or lock themselves out of their hide or can't find something in the kitchen. They're going to think it's Alzheimer's setting in and when it may just

be a normal course of life so they'll be feeling that they have this cloud hanging over them and may your erroneous they diagnose themselves too early and I think I think you're very perceptive to bring up that aspect of it that there are diseases that are treatable and if you look at test for things like Huntington's disease and untreatable devastating neurological disorder or you generally die before age 50. Many people don't want to now that they're at risk for the disease. If your parent has it you have a 50 percent chance that you will get it as well. But the children of the at risk individuals who then become adults themselves. Fewer than 15 percent want to know that they have this and treatable disease. And yet if we're saying that insurers or employers or educators have a right to require us to get testing in order to make their decisions about whether we measure up we're going to be forcing this psychologically devastating information on people

without about their consent will do dis to turn and look at this a little bit different way do we make the argument that says there is a kind of an absolute right for the individual to know and that is we would always say if you want to know whether you're going to developed Alzheimer's disease there. It's not my place or society's place to tell you that you can't have it. No. I think we did. We do have that absolute right now you have a right to know your own genetic make up. I think that people need to give a little more thought before they plunge into it. I mean some people for example have several I really want to know whether I have a gene mutation related to breast cancer once they've done it say and find out that they do have this predisposition. They sometimes say I feel like I have a time bomb ticking away inside of me. So I think you need some sort of counseling first to know the implications will it change your insurance profile will it cause some psychological stress.

And there are some fascinating cases I mean I know of a case where two brothers who are twins and who are both air traffic controllers were at risk for Huntington's disease. One wanted to know the other didn't. Now what do you do there because one of the first brother gets the test. He's basically revealing information on his twin. I mean even in that case he said it's a matter of individual choice. But you know there are tricky issues when you're talking about genetics which does run in families. You know there would be a case where be much more easy for that information to get out. The out of the control of the individual who not only didn't want to know but perhaps might not want anybody else to know. Sure and where they both could lose their job or their traffic controllers based on that information. Well have there been cases in which people based on information from genetic screening lost jobs or perhaps not been hired. And we'd say that that's a clear case of discrimination because the employer found out something about them and decided that based on the fact that they might develop a

particular kind of disease that either would interfere with their work or might result in big medical bills and then the employer would have to pay those if they were covering that the health care that we can we know there's cases where employers have gotten ahold of that information and said no we're not going to hire this person because of what the genetic screen says. Thank you. In my book Future Perfect I do give examples of both actual situations in the insurance area and in the employment area where people have been denied insurance or employment based on their genes. There's also. A whole other issue which has to do with whether employers should be able to test you without your information without your knowledge or consent. Right now we have some new protections and places under the American Disabilities Act the Equal Employment Opportunity Commission has said employers should not be able to discriminate against you. Just because you have a genetic mutation that suggests you might get a later cancer. And so that seems like

a great protection. Right. But. The law doesn't prohibit your employer from actually secretly testing you. And there have been cases where for example the Lawrence Berkeley Laboratory in California African-American employees were secretly tested for the sickle cell gene mutation and that information was put in their employment files without their being told. Now even if da da does protect them and they can't be denied a promotion based on that information how are they going to prove it first of all they don't even know it was in their file. And second can't the employer just then come back and say what was really it was based on your genes it was because you had a year less college than the next guy. So I think there are real problems with the fact that the law is supposedly pretty. Acts against discrimination but allows the employer to generate and hold the information and does not protect at all against discrimination based on the fact that you might have a gene that doesn't affect you but

makes it more likely you have a child with a serious genetic disorder which would be again costly as you point out the employer. We have a caller here and someone calling from Carphone so will not make them wait we'll get right to it and this is line number one. Hello. Hi I just wanted to make a very brief comment. When you discriminate in hiring against someone who is black or is a woman or has Down's syndrome or is short your hiring you are discriminating based on genetics as well that if you look at it that way is discrimination. Going on a very very long. That's all I want to comment on. OK I want to know and you know there are some interesting things that come out of that I mean we have them adapted cars that say you're not supposed to be able to discriminate employment based on race or sex and so forth but now we're creating new categories of sort of suspect groups people who where goes across race across sex people who might be at risk for Huntington's

disease. And we don't yet have an existing structure that does protect them in the kind of overall way that we'd like to do. Well you talk about the fact that there are very few states that prohibit genetic testing without the consent of the individual and I guess I wonder whether one thing that might influence the thinking of legislators along these lines is the increasing importance of genetic. Evidence in criminal trials whether they think because we're now we're putting together DNA databases of people who have been convicted of particular crimes and we're keeping that material and then later if we have some evidence then we can run it through a computer and compare it to all the other evidence we have and might that might turn up suspects that we otherwise wouldn't have been able to identify.

If we now start telling people that you can opt out of that is are there. You think there are legislators that are thinking well this is now undercutting this wonderful new tool that we have that we can use in investigating and prosecuting crime. Well we do have kind of an opening around called the Fourth Amendment. And you know protecting people against unreasonable searches and seizures and and that has applied in the forensic DNA situation so that police can't just come and take blood from any dog biting citizen in order to create a genetic a DNA bank to solve future crime. So we have this constitutional protection. Just don't take everybody's DNA. We take DNA only from people who have already been found guilty of crimes because they are more likely to be recidivist. And so we already have a rationale for taking those forensic samples in the first place. And. These

laws that do give people control over their genetic testing decisions in general have IQ's of three exceptions one is for forensics you know if there's a legitimate use of the police the second is for paternity cases where we're the court systems are ready to use it to get child support for children. And then the third is the newborn screening example that I gave where you know at birth the blood samples are taken on babies and they're tested for serious treatable diseases. So I mean I think they. Can you work consistently now the forensic case is really interesting to me because even that has been abused in some instances. Most states that collect these DNA databanks on prisoners don't have protection that would prevent insurers or others from gaining access to it. And in fact there's a court case pending in California where

it's relative of women on death row who are concerned with the uses that will be made of the DNA of those women since it revealed illnesses the relatives may become un insurable too. We are a little bit past the midpoint. I think perhaps I should introduce Again our guest for anyone who is listening we're speaking with Lori Andrews. She's professor of law at Chicago Kante College of Law. She is also director of the Institute for Science Law and Technology and senior scholar at the Center for clinical medical ethics at the University of Chicago and she has written a lot on this subject on a lot of speaking and has been widely interviewed. She's also served as an adviser to the Congress and the World Health Organization and the National Institutes of Health and the Centers for Disease Control and other federal bodies. She also served as chair of the Federal Working Group on the ethical legal and social implications of the human gene. Home Project and is the author of a recent book that explores this territory.

And if you're interested in reading about it you should look for the book it's titled Future Perfect confronting decisions about genetics that's the subtitle and it is published by the Columbia University Press. And here on the program your questions certainly are welcome. A number here in Champaign Urbana 3 3 3 9 4 5 5. We do also have a toll free line that's good anywhere that you can hear us around Illinois Indiana any place the signal travel that's 800 to 2 2 9 4 5 5 again 3 3 3 WRAL and toll free 800 2 2 2 w. whilom. One of the things that you write about an interesting aspect of this is that mistakes have occurred and genetic screening that is people have been screened say for a particular disease and they were told yes you have this this chance that you're going to have this disease and then they've gone out and acted based on that and then found out afterwards the lab that did the tests made a

mistake. Yes in fact I know a lot of pregnancies. That have been aborted where the woman was told that her child had a serious genetic defect and the child actually turned out to be normal it was a mistake there's a woman in the Chicago area who is told that she had a genes predisposing to ovarian cancer she had her ovaries removed. And then she learned that the test results were wrong. And part of that goes back to your point earlier about how the technology is moving so quickly. It's hard for doctors to keep up with this. In fact I was astonished to learn that one third of medical schools still do not teach genetics. You were reading about it every day in the newspaper and as a result in sort of the test that they give doctors about genetics the average score is about 74 percent and so you may be in. Trouble if you get a disease that fall from the other 26 percent. We have another caller here someone calling from southeastern Illinois. Number

four. Hello. Yes this is sort of a follow up of the question by the other caller. He was I think sort of pointing out that everything many things are genetic. I mean most of the things you mentioned already you can't discriminate against the exception. And of course you can discriminate against somebody for being short if you grab a certain height requirement. But my question is this what is the distinction between genetic qualities of a jar readily apparent without any scientific and knowable without scientific testing and genetic factors which are knowable only through scientific testing. And one of the answers or that might be the readily apparent or actual While the the test that you know the ones that testing our potential. So that brings this question. Are there genetic qualities. You know a bullet through

testing which are actually not simply potential and I'll hang up and listen. That's good question. I mean it goes to the issue of how predictive these tests really are. And with. Their 100 to disease tests the neurological disorder if you have the mutation if you'll live long enough you're going to get Huntington's disease. I mean you may get you may die earlier in an accident or something so that's a very predictive test. Most of the complex disorders that we test for the test really isn't terribly predictive. The breast cancer mutation that's higher among Jewish women if you have the mutation there's a 50 percent chance you'll get breast cancer meaning half these women don't get breast cancer even though they have the mutation. So that creates other difficulties it creates difficulties for the women making decisions about you know what to do it creates you know even and another layer of unfairness because employers may turn down people who actually will

never get it but it is again. It is a good question and I think it points to the fact that an awful lot of the popular coverage of the issue. I don't really think that it highlights just how at this point uncertain this technology is. We know that in in in many diseases genes play a role but in many cases we don't really know exactly how that works so that we cannot with most things we cannot with certainty say OK we can tell you what your chances are of having heart disease breast cancer or Alzheimer's disease. You know what are some some long line of things we simply we can't really do that right. Right and yet. There are institutions of society that want that knowledge. I mean insurers are willing to say well we don't care that if we cut out a family because they're at risk of breast cancer that we're going

to cut up some healthy ones along with the ones who are going to get sick themselves because it still saves us money. And so they're willing to use less than perfect. With the bottom line in mind and also there's a way in which because we see so many articles in the newspaper saying there's a gene for this gene for that social institutions like courts are really beginning to think that it's more predictive than want to actually would imagine and so I'm actually starting to see judges use genetic information in making decisions about it in court cases. For example in South Carolina a judge actually ordered genetic testing on a wife in a divorce case to see whether she had a genetic predisposition that would cause her to die in her if days in which case he was going to give the children to the husband. And you can see where that might go in the future where divorcing spouses might you know

routinely seek genetic information the child will end up going with someone not based on the fact that they're the best parent but because they have what seems to be at the time the best genetic profile. Well that's that's really fascinating and in also another respect troubling that someone would make decisions about the future based on such uncertain for me. Nation right in because even though we've heard this big. You know that fair around having to sequence the whole genome having to get out the alphabet of the 30000 genes in our body. We still don't know what most of those genes do. So again we might be making the wrong decision it may turn out that her husband actually has some other genetic disorder that will make him die even younger but we haven't figured out what that is yet. We have another call here back here locally in Urbana That's line number one. Hello. Hello. Yes just a specific question you just mentioned the situation

of possible discrimination by insurance companies based on the history of breast cancer gene. The question is Is there any law preventing that in the state of Illinois or federal law and maybe you could just say in general. What are some ways the best way for people to keep themselves informed about the situation. As Harvard Cinetic rights of the insurance companies employers and their organizations websites can do a good question in fact at the National Institutes of Health There's a National Human Genome Research Institute. And you know within their web site they often have updated information about what the various state laws are now. In Illinois you're not supposed to be able to discriminate an insurance based on the results of a gene test you not to be able to charge for example me a higher rate if I had a gene predisposing to breast

cancer. But Illinois has some loopholes. They don't prevent charging me a higher rate because of the family history because my mother had breast cancer for example. If that were the case and Illinois has a very unusual provision in that it says that even though they can charge someone with a. Bad gene a higher rate if. Someone with a good gene comes in and presents the information about that they can charge them a lower rate. So if you had two sisters one who was predisposed to breast cancer in the one who wasn't the quote healthy sister could go and get a lower rate so in effect the only law still does allow discrimination in insurance by allowing people to volunteer that they have energy. So that loophole should be closed. In addition there's a problem with doing it as a state law as opposed to federal law because state statutes.

Cannot cover companies that self-insure that needs to be done on a federal level because of some federal legislation that's in place dealing with pension plans and health insurance plans. What that means is that even though we have a law that seems pretty good in Illinois if you work for a company that is self insurers which are 85 percent of large companies that lot of them apply to you you have no protection. Well when they get to the question the caller id like to follow up he can call back anybody in fact can call. You have questions for our guest. Lori Andrews from the Chicago-Kent College of Law 3 3 3 9 4 5 5 that's for Champaign Urbana folks we also have toll free line good anywhere that you can hear us and that is 800 to 2 2 9 4 5 5 and also a. If you are interested in reading on this topic she has authored a book titled Future Perfect confronting decisions about genetics published by the Columbia University Press so you can go out to the bookstore or perhaps the

library and look for that if you want to read about it and of course your questions here are wrong. Welcome. We're just going back to the insurance question for a moment and weed there is this idea that insurance companies are entitled to take into consideration preexisting conditions. So I guess the question is it to me to what extent is the result of a genetic screening a preexisting condition and I suppose that insurance companies might have to get to the point where they say well how much certainty does there have to be before we can consider the results of a genetic screening a preexisting condition and take that into consideration when we're deciding whether we're going to insure somebody or not or what we're going to charge him. In an interesting case an HMO had a woman a pregnant woman who underwent the fibrosis testing during pregnancy. No that's a disorder now the children live till age 40 they have lung problems and so forth. They're of normal intelligence and so this woman

went forward with the pregnancy she didn't abort and her him out said Oh we're not going to cover this child at birth because Cystic fibrosis is a preexisting condition exactly what you're saying where the law requires in general that babies become Vered. But they were trying to shift the burden here by saying when the woman chose to go forward knowing that the child would have this particular disease she in effect was falling within the preexisting condition clause. Now there is a big protest about this instance in the HMO actually reversed its decision but you could see how if all genetic things are considered preexisting conditions that means we're all in trouble because every single one of us has between five to eight genetic defects. Maybe it won't you know come out right away we might have a later lung cancer or something like that. So insurance is come. Plainly changing it used to be this risk spreading idea we all put paid a little bit.

And then when one of us got ill that money would be used to help them. But now if insurers start using genetic tests what they're going to do is not do risk sharing anymore they're going to charge people. Really the cost of their own future medical care which will be prohibitive for people with Huntington's disease. So it does seem to be a little different than you know charging less to nonsmokers for example because it totally changes the idea of an insurance of insurance anymore. Just let me present another one of the hypotheticals. And that goes to the issue of employment and what is or is not discrimination supposing that that I am an employer and I am hiring people to work in an industry where there are we know that there are going to be exposed to very hazardous toxic substances something where there's a real danger that it will affect their health. And so I want to do genetic screening on my

employees say that I know that they're going to I'm going to be exposing them to known carcinogen. NS And I want to know the tendency these people might have to develop cancer because later I'm concerned that either I might have to bear their health care costs or maybe if they get sick they'll decide they're going to sue me and say that it's my responsibility. Am I Am I not entitled to take that into consideration in the way that I would consider other things about when in my trying to decide whether or not they would be a good employee or not. Thanks. You're raising a vision of the future we started the show talking about how in some ways this is like writing science fiction and I think about what the future is going to look like which law has traditionally been bad at doing. I mean do we really want to have it be where employers don't have to clean up the workplace. They just keep hiring people with sort of tougher and tougher genes. I actually was at a discussion at the federal level about about finding out potential soldiers or people who

had genetic profiles that would make them less likely to be susceptible to toxins like they have a Gulf War Syndrome or of of certain nerve gases that were used and. You know my tendency was to feel sorry then for these people who are going to be sent out in the field to be in and put up with these enormous risks. But I found that the people who actually want to buy legal services were the soldiers who were going to be excluded from taking those risks because they said listen if you're doing an army as a career the only way you get ahead is to see combat. And I think that's the dilemma and all these things. We're going to take people at a higher paying job based on their genes and some of them are going to say listen it's more important for me to be able to feed my kids now than you know be concerned that 30 years from now this might cause me to develop a particular disorder. So the way the law has handled it. Is to say it is in a vague way to say that the.

Medical test you do even a genetic test must be job related. And yes so for example you might not want someone who is color blind to be in a job like Pat ology that requires color discrimination in our abilities but it usually means can you actually perform the tasks of the job. Not is the job going to harm you. But I think that one fascinating thing is we're going to see this head on collision between laws giving workers rights and our other set of laws like the Occupational Safety and Health laws which in some instances do say that employers should. Test people to make sure you're not putting vulnerable people into risky situations. Well I suppose in a way we have come around in a circle to the point where he started at in in in the respect that we say that

individuals have a right to this knowledge and we can understand why people might want to know these sorts of things but we also want to put the control of the information in their hands. And as you mentioned there are just a handful of states that have laws against testing genetic testing without consent. And even in some of those places it is possible for people for outsiders to get access to that. Information without your consent even though if you have to consent to being done in the first place. So it sounds as if. The we ought to be moving along the discussion of the issue and also perhaps suggesting to state legislatures that this is something that they ought to be thinking about. Yeah I think that what would be ideal to see would be a law that as a first matter prevented people from testing you without your permission or even asking preventing insurers or employers from from even asking you because

you'll be obliged to consent otherwise. And then the second tier protecting your genetic privacy. Say I decide to go ahead and get this test for my own use have me have some control over who gets access to the results and then at the third level protecting against genetic the actual check discrimination decisions made against me based on my genes although if so that's very hard to prove. And then I'd also like to see if you could tell from my discussion a ban on gene patents because I think that once we started giving. Financial interest too. Researchers say the person who owns the breast cancer gene the incentive on the part of that researcher that company is to test as many people as possible as quickly as possible. So what I'm seeing is that so many geneticists now have including geneticist at the National Institutes of Health itself that I can't find neutral does not assist to go to ask whether a test is ready for prime time yet is a good to have because the

incentive now of everybody is to push these tests along Market them very very aggressively. Well we have touched on a lot of issues and I'm sure that he'd keep going but we're here at the end of the time so for the moment we're going to have to stop I'm sure will come back to some of these things in the future for people who are interested in reading more on the subject I again want to mention the book it's titled Future Perfect confronting decisions about genetics published by Columbia University Press by Lori Andrews. Lori Andrews is professor of law at Chicago-Kent College of Law and to you Professor Andrews we want to say thanks very much for talking with. My pleasure.