GENETIC DISCRIMINATION: A PRIMER
 

Diane Horn Interview with Phil Bereano on KCMU 90.3 FM-Radio (Seattle, Washington, USA)
January 19, 1998

Contents

 

1. Introduction: Science & Policy

Diane: Recent "advances" in genetics are being touted as bringing in a new era in medicine. The Human Genome Project (HGP) is rapidly determining the complete sequence of human DNA. Genetic tests now can tell us whether we are predisposed to breast cancer or whether we will get Huntingtons' Disease. Is this a good thing? Will this information help us? Or will it be used in ways that are detrimental to individuals and to society? To help answer these questions, we have as our guest Phil Bereano, Professor of Technical Communications at the University of Washington. Phil is an expert on engineering technology and public policy. He is also a member of the Council for Responsible Genetics, the Washington Biotechnology Action Council, and is on the local and national boards of the American Civil Liberties Union.

The number of genetic tests available to us has increased dramatically in the past few years. What are the dangers of genetic testing?

Phil: The dangers of genetic testing depend not upon science, but upon law and public policy. If one is in a jurisdiction which has strong and adequate laws protecting privacy of genetic information and protecting against genetic discrimination, then there are few reasons—except personal reasons—not to get tested. Unfortunately a large majority of Americans live in states which do not have these protections and there are no national protections. So for most Americans, what we have is a dilemma.

Diane: Do you feel that the scientists and people that develop these technologies don't think about the ethical implications of what they are doing?

Phil: I am sure many don't. The week when we had the startling news about the cloning of the sheep in Scotland (Dolly) the lead inventor is quoted very explicitly saying that the ethical and social implications of what he was doing are not relevant to him. "I am only a scientist," he said. What this represents is the development of an artificial construct—a social construct—which supports the reductionist notion that we can segregate all of our human activities, including science, from a social context and that science does not have social responsibilities.

Now, in the case of genetic engineering, we are also talking about a science which has been initiated and funded by government tax money to the degree of 95 percent or something like that. So, for scientists to say somehow that they don't have social responsibility is to deny not only their responsibility as citizens but their responsibility as professionals who are highly privileged in this society, and supported by the taxpayers.

Diane: It sounds like a little bit of "it is not my department" coming through the system.

Phil: Exactly. It is the perfect reductionist mode which is like the industrialist manufacturers saying, "oh, worrying if there is a carcinogenic effect in the chemicals we are using isn't my responsibility." American citizens are increasingly not willing to put up with this. I think this is one reason why scientists have lost their mantle of authority.

Many biologists still think they can operate under the old-fashioned mode of the altruistic biologist. But they aren't being altruistic. Most of them are in fact being hired by private companies or are major shareholders and consultants to private companies. The conflict of interest in the case of situations at universities, such as at my own university, the University of Washington, is really quite substantial in this regard. The private interests of scientists often are not very socially responsive.

So, unless we understand the social context under which science operates, I think we are deluding ourselves. As citizens we are disempowering ourselves.

 

2. Definition & Examples of Genetic Discrimination

Diane: How would you define "genetic discrimination"?

Phil: Genetic discrimination is making distinctions between people by perceived heritable characteristics which have no basis in rationality or in public policy. That is to say, it is not discrimination for a black person to realize that white people are not black, or for white people to realize that black people are not white. In other words, there are differences among people and in many contexts it is perfectly acceptable to acknowledge them and deal with them. But making public policy decisions on whether benefits, costs, and risks are assigned to people based on these distinctions presents the issue of discrimination.

Diane: What would be an example?

Phil: Insurance writers generally distinguish between smokers and non-smokers when writing policies. Smokers get higher rates because they are at greater risk. Since that is related to good public policy goals—the protection of public health—it is allowable in the United States. Now it is also true that statistically Mormons live longer than non-Mormons. Maybe it is because of their life style or environmental issues, or maybe because of their genes—some people predict—or maybe both of them. For whatever reason, it is statistically demonstrable that Mormons live longer than non-Mormons. In no state is it permissible, however, for an insurance company to offer lower premium rates to Mormons and higher ones to Baptists and Jews.

The reason is not because of science. It is because we have public policy concerns which override science. This is something that scientists don't want to acknowledge or understand. But this is something that people do need to understand and to appreciate. The long history of religious discrimination made such a severe mark on the American consciousness that we have the First Amendment and other public policies to say that it is wrong to discriminate on religious grounds even if it is scientifically justifiable.

Diane: How about if it is shown that you are predisposed to a genetic disease? Would you consider this discrimination as well?

Phil: Yes, I believe that health care is a right, not a privilege of those who are either wealthy or who are lucky in the genetic lottery. In every industrialized country, except for the U.S., health care is understood to be an inherent human right. It is only in the U.S. that we have the discussion about genetic discrimination with regards to health insurance. That is because we have private entities interceding in this system whose goal is to make money—not to take care of the sick.

Diane: So the real problem in this country is the health care system we have and the genetic discrimination issue is kind of an artifact of the system.

Phil: There is also genetic discrimination in life insurance, employment and liability insurance. I even know of a case of someone who couldn't get automobile insurance because they claimed he had bad genes. So, health insurance is not the end of it. It has been the entering wedge mainly because we have begun to have more explicit debates in the U.S. on matters of health care policy; for example, the whole debate around the issue of what is called "pre-existing conditions" and whether those should be reasons for denying insurance. In Washington State, under reforms that were enacted a number of years ago, it is not permissible for an insurance company to refuse to issue individual health insurance because someone has a genetic predisposition. This is also the law in about 14 other states, usually by statute.

What is a genetic predisposition? It is really a pre-predisposition. If you can't deny the manifestation of it, i.e., you can't deny insurance to someone with cystic fibrosis, how can you deny insurance to someone who might get cystic fibrosis? Diane, you referred to the fact that all kinds of claims are being made as the Human Genome Project marches on finding genes that cause certain things. Actually, very few diseases are caused by a single gene, as far as I understand, and very few diseases are 100 percent inevitable. If you get the disease, it is not clear when in your life you will get the disease or how severe it will be.

Furthermore, many genetic diseases, if not curable, are certainly treatable through drugs. Part of the reason why people don't immediately realize this is the ideology that is promulgated in this country that genes are the blueprints of your destiny. They are not. If you have a certain genetic disease and take certain medical intervention, you are not going to have any symptoms.

For example, in this country and I believe it is in every state, newborn babies are tested for not only their blood type and things like that, but for PKU. PKU is a genetic situation in which the body is unable to correctly metabolize certain proteins. I think it is because of the absence or malfunction of a certain gene that performs that metabolic function. Anyway, it has long been recognized, long before the Human Genome Project, that putting the newborn on a certain kind of diet can in fact compensate for this condition. That is why every state has required, even at a time when genetics was a much more rudimentary science, that newborns be tested for PKU. A person that has been through that regime is not in any demonstrable way different from anyone else. So I want to assure listeners that when we are talking about genetic diseases, we are talking about an enormous grab bag of different kinds of situations. Some of these are mild manifestations in some people and never occur until late in life.

Diane: Do you have some stories of discrimination.

Phil: Lots. I'll just talk about a few. I was at a meeting of the National Association of Insurance Commissioners trying to get them to understand this issue and pass a paper that would reflect it. One of the people whom my colleagues and I from the Council for Responsible Genetics got to testify was a lawyer with a blood disease—an iron imbalance—that was treatable through some kind of blood-letting maintenance system. He is perfectly healthy and has been for years. He had to testify fairly rapidly because he was going off to play in a soccer game! However, he cannot change jobs because leaving would mean the loss of his group insurance coverage and he was told by insurance carriers they would not cover him on an individual policy.

Another example shows that it is also the case with Health Maintenance Organizations (HMO). A woman who was enrolled with her family in an HMO was in for an exam to confirm her suspicions that she was pregnant. She was told by the OBGYN, who knew the woman had a youngster with cystic fibrosis, that the fetus might be carrying defective or abnormal genes that would predispose the fetus to cystic fibrosis and he would like to arrange for a test. The doctor assumed that if there were cystic fibrosis, the woman would schedule to have an abortion. The woman said she wanted to discuss it with her husband first.

A few weeks later the doctor encouraged her to have an amniocentesis test when she was in for her visit. She informed him that she and her husband had decided not to do that. Rather, they would let nature take its course. They love their first child despite the problems and would be willing to go through it again. The parents were then notified by the HMO that if the woman did not submit to an amniocentesis and agree to abort the fetus if it were shown to display the defective gene, the HMO would not only refuse to cover her pregnancy, but they would disenroll the existing child with the disease.

This of course was flagrant and outrageous, and the woman knew some good attorneys and publicists; they did a whole campaign and the HMO had to reverse itself.

 

3. Civil Liberties & Genetic Privacy

Diane: How widespread is this?

Phil: We don't know because, of course, most people are either afraid to get tested or to reveal their test results because they understand that they are subject to discrimination.

The civil liberties of genetic privacy are important concepts that we have to understand. The ability to control information about one's self, whether it be credit information, life style information or health information, is an important civil liberties value that has been substantially eroded over the recent decades. In the guise of rationality, efficiency and better maintenance of things, it will further erode if we are not vigilant.

For example, in the last election Bill Clinton was fond of saying to audiences something to the effect of, "In the not too distant future when a newborn baby arrives, the whole genetic makeup of that child will be printed on a card and you, the parents will be able to make all kinds of decisions about your child on the basis of that information." Aside from the question of whether or not this is actually possible, the issue I want to ask is, is this desirable? How many hospitals, doctors and health insurers will also have all of that information? How many employers and HMOs will also have the information?

Will we get to situations where families will object to marriages unless you present your genetic profile and it is approved by your perspective in-laws? This is not so far fetched. We already have communities in which genetics is being used as a basis for making arranged marriages.

Diane: So, medical records are being put into computer databases which make it much easier for someone to access to find out information?

Phil: Exactly. There is a single database in Massachusetts which the insurance companies use has about 15-20 million personal medical records in it. Most people don't know about this. The rights of controlling what I call the "front end problem"—the taking of information—is a major issue.

But then the other privacy rights which have to do with the control of the information are equally important. For example, can you the individual specify the situations in which the information can and cannot be used? Do you get notified when third parties approach the databank and say, "we would like to use this information". Do you have the right to review the information and change or correct it if it is inaccurate? Do you have the right add explanatory or additional information in your file? Francis Collins, Director of National Institutes of Health's ethical program for the Human Genome Project (which is roughly 4 percent of the entire project) went to existing data banks taken for Tay Sachs disease 20 years ago, and examined the stored blood samples for a cancer gene. He is a world renowned researcher who gets access to stored data (they were blood samples by the way, so all kinds of information about people was included) and we trust his good judgement as to what he is looking for. But say we are looking for something that is a little more controversial, like schizophrenia. Would you like to be labeled that you have a gene for schizophrenia or alcoholism? Or other bizarre behaviors that people are claiming are genetic? Of course, none of the people that gave blood that was in the sample were asked for their permission.

Should they have the right to give or deny permission? I believe, as a civil libertarian and as an American, yes. People ought to have the right to control information about themselves.

 

4. Misuses of Genetic Information

Diane: There was a 1989 survey sponsored by the Congressional Office of Technology Assessment that found several Fortune 500 companies were doing genetic screening of their employees. What are the implications of genetic screening in employment, and has anyone lost their job as a result of the screening?

Phil: Sure. The Air Force, to give the most outrageous example, screened African-Americans for sickle cell trait. Sickle cell trait is the presence of a single gene, not a pair of genes, and can not cause Sickle Cell Anemia. But, despite the fact that this was routinely pointed out to the Air Force for many years—at least a decade or so—they refused to allow African- Americans with this trait to become Air Force pilots. They were afraid that changes in oxygen levels in the cockpits would trigger sickle cell disease. This might be true for someone with two genes and a history of sickle cell. How severe it is might then become an issue. But, this is impossible with people who have sickle cell trait. This is an example of the misuse of information.

The testing of employees, or applicants for employment, is rampant. One of the most notorious cases I would like to mention has to do with Lawrence Labs in California which has secretly been testing employees, women, African-Americans, and Hispanics, for pregnancy, sickle-cell, and hypertension, without their knowledge or consent. This is the subject of litigation now on appeal to the 9th circuit Court of Appeals. This is the kind of invidious, discriminatory thing that genetic testing makes possible.

We do have legislation that purports to block such processes—such as the Americans with Disabilities Act— forbidding discrimination on the perception of a disability. We have acts related to gender equality and how to treat pregnancy and so forth. Nonetheless, indications are that screening is widespread. It is power. It is a tool that is offered to those in power and it is a way that people in power express their power by manipulating, surveilling, and monitoring people who have less power than they do.

Diane: Another place where it may come in also is with employers wanting genetic information and then making decisions about whether to hire someone who has a disease they think will lead to a health condition that they don't want to pay for, etc.

Phil: This situation has actually gone up to the U.S. Supreme Court. I think it was an attempt to bar women from a lead battery manufacturing operation and the company lost on the grounds of gender discrimination. The company was saying that lead interferes with reproductive capabilities and so forth. One of the main occupational health aspects of this is that employers would rather discriminate against prospective employees than clean up the work place. I don't think men should be exposed to excess lead levels either.

If we think that this kind of differentiation ought to be allowed, doesn't it make sense that if people are allergic or susceptible to this and that, we keep them away? What we are doing is: (1) We are treating those people as damaged goods. We are devaluing their personality. (2) We are discriminating in ways that are not justifiable. The employers should clean up their act.

 

5. What You Can Do

Diane: What can we do as individuals and as a society to see that the new genetic technologies are used in social and responsible ways?

Phil: People need to organize around these issues. That is the way that social change happens. People need to speak to their legislators and say, "I want you to support bills outlawing the use of genetics for...," etc. People need to organize speak-ins at their churches and synagogues, union halls, community groups etc. There are people who can speak to these issues and help organize citizens around these issues.

The following websites are also good resources for learning more about the issues surrounding both human and agricultural uses of biotechnology:


Washington Biotechnology Action Council (WashBAC): http://weber.u.washington.edu/~radin/.
Institute for Agriculture & Trade Policy: http://www.igc.org/iatp/.
Rural Advancement Foundation International: http://www.rafi.ca/.
Union of Concerned Scientists: http://www.ucsusa.org/agriculture/biotech.html.

For a glimpse at how a deliberative panel of everyday citizens views issues in biotechnology, see the "Conclusions of the Lay Panel at the Consensus Conference on Gene Therapy 22-25 September 1995" from the Danish Parliament's Board of Technology: http://www.tekno.dk/eng/publicat/f95gethe.htm.

Some GOOD BOOKS include:

Hubbard, Ruth (1993) Exploding the Gene Myth, Boston: Beacon Press.
Lewontin, Richard (1993) Biology As Ideology: the doctrine of DNA, New York: HarperPerennial.

 
 
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