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 abou t 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 stra tification 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.
Click here to go to part two of this interview.