SD: So what is someone's alternative when they feel they've been discriminated against? Is a lawsuit the only answer?
PB: It depends. If it's an insurance issue, people who have persisted have sometimes gotten satisfaction from the appeal process. They go many months without insurance during this process, but people can win. You have to be a very good self- advocate, speak English, and have enough money to persist. You can't be afraid to embarrass yourself at work, or worse, risk your job. If you're able to do all that you'll probably get satisfaction from the system. And, of course, there are lawyers who'd like to argue these issues in court. The system is stacked against you, and you have to able to fight it, and that's hard.
SD: Do you anticipate a precedent-setting case in the courts?
PB: I don't know. I don't think there's any evidence that that's how things change in our society. [laughs] You have to change people's attitudes through education. I think the health insurance issue is clear cut. I don't think we need to research the idea that people should have access to health care in this country, and they should be able to stay financially solvent while getting it. You may need to research the best way of changing this inequitable system into an equitable one. I would rather have people know that genetics doesn't tell you very much about how someone is going to use the medical care system, or how good an employee they're going to be.
SD: Is it the job of human geneticists to take on this kind of educational role? Should business and government be required to consult with human geneticists before they make policy?
PB: Yes, and I've actually heard about a number of wonderful new programs where clinical geneticists, even those with disabilities, are conducing corporate programs, demystifying genetic disorders as employment criteria or indicators of high insurance risk. That also presupposes that human geneticists can give a responsible account of their own discipline's history, both its applications and its limitations. Many genetic scientists don't know the history. These guys -- like me -- are lab rats who never see the light of day, and really don't know what the problems are. They just do their experiments and write their grants, which are hyped versions of their work's importance and how it's going to transform society. Look at the rhetoric around the human genome project -- "the holy grail, the essence of humanity, every illness is genetic.'' It's a skewed and narrow way of looking at the problems. We have to re-educate the human geneticists -- or at least historically educate the human geneticists, as well as the public at large. Human geneticists have to be in the vanguard of teaching the limited applicability of human genetic information in making social decisions.
SD: What about eugenics?
PB: Ideas about genetics start out positive and hopeful -- liberation from the curse of one's parents, new treatments for disorders, new freedom to make choices. But then questions of control and determinism appear. What are we going to pass on to our children? The history of genetics in the U.S. is just full of eugenics -- from forced sterilizations and the Immigration Acts, to sickle-cell screening programs, to new calls for population and immigration controls.
GW: Issues of crime and heredity?
PB: Crime and heredity is a very good example of applying genetic explanations to social problems. If the link is accepted, it implies the elimination of the people who are genetically susceptible to one thing or another -- and that's eugenics. If you look at other cultures it's even more profound. I don't think that genetics necessarily has to be that way. It has to do with the way people learn about genetics, with psychology, with inherently racist societies. Popular genetic science tends to reinforce ethnic and racial stereotyping. My hypothesis is that if we could find societies which are relatively free from racism and sexism and other forms of stereotyping, they may be less likely to abuse and more likely to intelligently use genetic information.
GW: In Backdoor to Eugenics, Troy Duster compares Denmark or Scotland -- which are very racially homogenous -- and what's seen as a legitimate question in more racially-mixed countries, like the U.S.
PB: Yeah, well, I think it can run either way, right? I just took care of a Vietnamese kid who has Down's syndrome, and his family had never noticed! I attribute that to fairly homogenous societies -- it either has to be so shocking, so different that they just say "it's different,'' (and probably discriminate against it), or they assume its part of the homogeneity of the group. Our society is economically and politically stratified. The genes of the lower ranks are thought to be less desirable than genes of the high ranks.
SD: How are people reacting to possibile and real discrimination? Are people lying or refusing to be tested?
PB: I'm to some extent pleased that many people who would potentially "benefit'' from a new test are declining it. One of the reasons is that they have a sense that discrimination will follow. They also don't want the information for other personal reasons, that's their business. Many people will decline to have the test for Huntington's or Cystic Fibrosis if they're given the option. Other people who have genetic information about themselves will lie about it. Some insurance agents will encourage people to lie because they know honesty will lead to denial of coverage. Physicians will obfuscate this material in medical records and billing so that insurance companies don't get it, because many physicians -- quite correctly -- want to protect their patients.
SD: Would that impair later treatment?
PB: If that information were readily available and the patient were having an acute something-or- other, yes, that could be a problem.
SD: Have you heard of people who are forced to stay in jobs for insurance?
PB: Well, not exactly. I've heard many people take it into consideration, and I'd encourage that. If you're considering undergoing genetic testing for anything, you should take care of any job and insurance issues before you do it. And you should be aware that insurance companies may not want to pay for it, or they'll make insurance contingent upon you paying for it.
SD: What do you know about the bill introduced in the House of Representatives?
PB: The Genome Privacy Act protects one's right to find out what genetic information is being held by an agency, to rectify it, and to sue if it's being abused. It's an interesting starting point. I like the civil rights model better than the consumer credit model which doesn't get at the issue of why companies should have any right to store the information in the first place. I was listed as one of its sponsors but I think it's flawed. I hope that the discussion heads more towards "rights.''
GW: Do you see any roadblocks to a darker use of genetics -- forcing people's decisions rather than informing them?
PB: There'll be a group that'll say we should look at high susceptibility and low susceptibility individuals, and people who are highly susceptible and act irresponsibly should not have access to care or should pay more for it. It's like, "if you smoke, you can't have health insurance'' -- or if you have a "bad gene'' and you act irresponsibly, you should be punished. I don't think it's right, but I can see that happening.
GW: There seems to be an unhealthy fascination with technique, and little consideration among research geneticists of the implications. Or is that just a reflection of what gets published?
PB: No, I think you're quite right. I think genetics is a "gee whiz'' kind of science. No one anticipated that it would get so detailed, sophisticated, and miraculous so quickly. People just don't talk about the limitations. No one ever said that basic scientists could understand the problems of society. These are narrow, focused, ambitious guys. There's no reason to want them to be leading our society.
GW: The people who are pushing for a genetic explanation of complex behaviors -- alcoholism, mental retardation, crime -- are often people who aren't geneticists.
PB: Yeah that's true. Troy Duster actually has some nice data on that.
GW: What would you be doing if you had control over, say, National Science Foundation funding?
PB: That's a good question. Well, I would apply it to the common disorders of man. That's a reasonable application of genetics, because we don't have a clue about the etiology of many common disorders. We know that environmental factors are involved, so genetics should be funded equally -- or more. I don't think it's inappropriate to apply genetics to any and all questions. At the same time you have to acknowledge the limitations of the insight that you're going to get. And if you find a genetic link to cancer, or a genetic link to heart disease, or even to mental disorders, it's only the first step in trying to describe a system which is extremely complex. Genetic information may be an important step, or it may be a totally irrelevant step. It's right to study things that affect a lot of people and cause a lot of misery. So that's what I'd do.
GW: This is sort of related to our magazine. Our last issue was looking
at "The Good Job,'' and we had a lot of people who were leftists, or at least
liberals, who drifted into jobs that had pretensions in that direction -- the
ACLU, labor unions, co-operatives, etc. Do you have a good job? And if so, why?
PB: The only good part about my job is that I teach. Education is a very
big part of this. I sit around with people like you, and do a lot of TV and
other stuff, because I think it's a modern form of public education. And I do
research, which has a "morally redeemable'' side to it. But I work in the private
medical world, and my salary is paid out of the profits of a private medical
institution, so in that case I suppose I am a representative of a system which
is in fact disordered, and causing people problems.
