interview with dr. paul billings, by shelley diamond & greg williamson
We Don't Gotta Show You No Stinkin' Gene Screens!
This interview with Dr. Paul Billings, a specialist in clinical genetics with a Ph.D. in immunology, was conducted in July, 1990 at his office in the Pacific Presbyterian Hospital in San Francisco by Shelley Diamond and Greg Williamson.
PB: Modern genetics is about 20 years old. We can test now for about 500 medically related disorders that have a genetic component. We have mapped about 2000 human genes on specific chromosomes within each of our cells. We don't really know how many human genes there are, probably about 100,000. So we've mapped about 2%, and in a very short period of time. The curve is growing at an unbelievably quick rate. We'll probably have a very high quality map of most human genes within about 5 years.
I was a member of a group called "Science for the People,'' which had a sub-group, "The Genetic Screening Study Group.'' We were studying sociobiology, the XYY controversy, and intelligence testing issues. We wondered if there was any evidence that ge netic testing was being used in a discriminatory fashion, but there wasn't. That was 1987, and I advertised in 1988 to see if people would write me about discrimination.
SD: Could you give us some history of how insurance companies, government and employers have used genetic test results?
PB: Well, each has a different type of history. Insurance companies historically factored out costs over large groups, and the healthy people paid for the sick people. That was the principle of insurance -- spreading the risk. A variety of influences , including better testing, certain laws and taxes, and competition, made it fashionable to begin insuring smaller and smaller groups, looking at that group's experience over a period of time in terms of how many medical costs they were incurring, and th en, if it was high, rating them as higher risks. That's called "experience rating,'' rather than "community rating.'' And that led towards medical assessment of people as they were coming up for insurance.
At about the same time most people in the United States started getting their insurance through their workplace. So these forces coalesced to make small businesses and individuals the object of o7 3 medical underwriting, which is the assessment of hea lth prior to the delivery of health insurance. Insurers solicited doctors' records and began asking people to undergo testing for things like high blood pressure and cholesterol, and HIV. They would also solicit genetic information, even a detailed famil y history.
The insurance industry has invested in genetic testing laboratories and companies that assess one's genetic health. Insurers would like more genetic information about their clients, because they could rate people with bad genes higher, and they could lower -- quote "lower'' -- the rates for people with good genes, whatever they might be. They have been kind of cagey about the whole business, but genetic testing suits insurers because they can stratify the population more. But there is no epidemic of genetic disorders. The number of genetic diseases and the number of people affected with genetic disease is roughly the same as it was a hundred years ago. What we've been able to do over the last 20 years is to detect these d isorders much more early. In fact, we can detect them maybe even years before they become a disorder, so insurers are stratifying people genetically even though their actual genetic disease- related costs are not much higher.
SD: So everything that the insurance companies do, as far as requiring tests or getting access to the test information, all of that is legal?
PB: Yeah, because they make your ability to get insurance contingent upon consenting to their seeing that information. Employers are not covered by the same rules as insurers. There's virtually no control over what they can do in the pre-employment s etting. Unions have been a strong force in trying to get employers to act in a reasonable fashion. The 1990 Americans with Disabilities Act says that employers have to offer a job to anyone who's qualified to take that job as long as they don't have a di sability which will prevent them from doing the job properly. That could force employers not to do medical underwriting, which they often do for the insurers.
GW: Do you think the recent decision on Johnson Controls in the Supreme Court might have any bearing on this? I mean, this idea that women who were supposedly more at risk couldn't get some jobs without being sterilized?
PB: I would like people to have as much of their own genetic information as they wish, but I would like to see them retain complete control of it so that they can't be coerced into sharing it. In order to get jobs, in order to get certain kinds of en titlements, people will give up a lot. I would like to see that minimized.
The Johnson Controls Case is in the same ballpark as what we've been talking about. People should make up their own mind if this is an appropriate risk assessment. Employers don't need this information, and shouldn't have it. Employers should be conce rned with risks in their workplace -- that is, risks that they're creating by exposing workers to toxins, to unsafe practices and equipment--and let the individual decide whether they're at high risk or low risk.
If employers start saying "Everybody with this kind of history -- or this kind of genetic test -- can't work here,'' that will be discrimination. Some people in that group can and should be there, and might be the best for that particula r job. So it should be an individual decision.
GW: Why do we test for things that tend to affect blue-collar workers rather than management?
PB: There's another way of looking at that. Companies might be interested in doing genetic testing to identify those people who they might promote to an executive job, but who might cost them too much in health or life insurance. Someone told me about a vice-president discovered to have a genetic disorder which didn't actually have any impact on his longevity or ability to be productive, who was denied promotion on that basis. But you're right--we see genetic testing used to promote labor-force stratification to reduce the power of blue-collar workers.
SD: The problem becomes limiting access to employer databases. How do we get a handle on that?
PB: Once you have a database, it's almost impossible to make it secure. The point of attack is to say "Why? What right do they have to keep that data in the first place?'' Or from the federal government point of view, "What is the public interest in saving this data?", which is, according to law enforcement bureaucracies, detecting crime. If databases contain genetic material, people could learn virtually everything about your genetic make-up. Now that wouldn't tell them much about you, but t hey may think that they know something about you, and certainly might use that in some way against you.
SD: Could you give us some examples of discrimination? I'm particularly interested in people who were discriminated against for just being at risk versus actually having a disease.
PB: One is the couple who were at risk for having Huntington's Disorder. And they decided to forego undergoing the DNA test, instead deciding to adopt. They were very nice, made a nice income, a perfect adoption family. When the adoption people asked about family illnesses, they told them about the Huntington's. And that excluded them from the adoption process!
It's classic in clinical genetics to advise people that adoption is a way to avoid transmitting a genetic trait. The wife was in her thirties, and statistical analysis indicates her risk of o7 3 having the gene for Huntington's when she was born was 5 0%. But as time goes on and she's unaffected, her risk goes down. If she's passing through her thirties without showing it, there's less chance it's there. So her risk is less than 50%. That's the same as people with family histories of diabetes or cance r, yet they don't exclude people for those.
Then there are neuromuscular disorders, which are highly variable in the people who have it. Some people in the family might be wheelchair-bound, while others wouldn't even be affected, and you'd need a DNA test to detect it. There was one case in which someone went in with a parent who showed it. Specialized testing revealed that the child had it, too. The child applied for a job and was turned down because they admitted to a positive test for the disorder. But they were perfectly fine, and i n fact, a severe case wouldn't even affect their ability to do the job.
Or take the case of the salesman who had been driving for 20 years with a neuromuscular disease without an accident, a ticket, or any change in his illness. This guy had the gene, had a physical manifestation, but he wasn't ill. He wasn't compl aining, he wasn't using extra medical care, he wasn't taking medicine for it. His car insurance agent found out about it through an application for life insurance, and canceled his auto insurance, so he couldn't make his living. The man's doctor sent a l etter to the insurance agent, saying this guy is perfectly healthy, a perfectly good driver, but it had no effect.
Then there are cases in which someone is identified as a carrier for a recessive disorder through the diagnosis of the full-blown condition (say, Cystic Fibrosis), in a nephew or a relative, and their carrier status is used as a reason not to i nsure them.
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.