Winding Your Way Through DNA Symposium

San Francisco, California
Saturday Afternoon, September 26, 1992

Questions from the Panel and the Audience for Neil Holtzman, MD, MPH

Question: Dr. Holtzman, I'd like to start off by asking you to comment on cystic fibrosis screening. The Federal Office of Technology Assessment released a report last month (August 1992) that contained results of a survey of insurers and they disclosed that, although few of the insurers expected to require genetic screening in the next five to ten years, most of those responding to this survey said they felt it was fair for insurers to use genetic testing in evaluating health risks of applicants. They also felt they should have the option of determining how to use such information and moreover stated that they felt genetic information was no different from other kinds of information to be used in calculating a person's insurability. Could you comment on this?

Neil Holtzman: Who was surveyed?

Questioner: The Federal Office of Technology Assessment Survey...

Neil Holtzman: Whom did they survey?

Questioner: Insurers.

Neil Holtzman: Well, I think it's pretty clear from what I said, that insurers, private companies, need a test, and it goes a little beyond what I explained. Because if a person knows he or she is going to develop a disease, one of the tendencies that many of us would have might be to go out and buy insurance. And if the insurance company did not know that we were at increased risk, it would sell us the insurance at the standard premium. If many of us who are at increased risk did that, the whole actuarial basis of insurance, at least life insurance, would be thrown off and the insurance company would lose money. Their profits would not be as great. So that once it becomes possible for people to know more about their risks the insurance companies have to know it as well. It's called adverse selection.

Questioner: How do we balance privacy, civil rights and progressive programs of diagnosis and prevention, pending establishment of a system of national health?

Neil Holtzman: Well, I don't think we do, in terms of accessing, in terms of genetic discrimination. Nevertheless, I think it's fair to say that a universal health insurance where everybody has access to care is not going to resolve a number of the problems that I've talked about. It could be equally as possible for a government, perhaps even more so, who is interested in reducing costs to want to know about the genotype of individuals and to put certain restrictions on those individuals even going to the extreme of requiring prenatal diagnosis or as there are still laws on the books in a number of states requiring sterilization for people who are or may be at risk. Those are laws that came out of the eugenics movement in this country in the early part of this century and are still on the books in a number of states. So I think one has to be wary that while universal health insurance and national health insurance might solve the problem of access, we have to be extremely careful, still, about problems of privacy and confidentiality and for deciding how we want to use the results of genetic tests.

Questioner: Do you have a mechanism in mind, an organization, a governmental body or ombudsman who should be addressing these issues? How should they be tackled? The concern that you raise is obvious but the mechanism by which to address it is not quite there.

Neil Holtzman: Well, there are a number of mechanisms. I did not mention in a direct sense that there is a small portion of Genome Project funds that are set aside for considering ethical, legal and social issues (ELSI). And at the moment, there is a committee of that group that is looking into the problems of insurance. Now, Congress, or at least one of the committees in the House, is becoming rather restive about whether there will ever be any recommendations that come out from this particular means and has called for an independent commission to look into questions of privacy and consequently genetic discrimination. There is a committee of the Institute of Medicine that has bee supported by the ELSI Program that does not have the restraints that say a committee that directly operates under NIH may have, and this committee may come out with some recommendations. As I indicated, there's already considerable interest in Congress and one privacy bill was introduced last year (1991) that did not go anyplace. I expect that if the problem materializes or in anticipation of it, we may see more activity.

Questioner: There is another survey that's just coming out this week (September 1992) by Louis Harris of average Americans who also, surprisingly, agree that others should have the right to know genetic information from an individual, including insurers and employers. I'm wondering if there isn't some idea that once something is known, that the information is found, that somehow puts it into a new category. There's something known, whereas if something wasn't already known we wouldn't be grappling with this issue. That there's a concern that once we go ahead with the testing that therefore it should be made available and a lot of people actually agree, that if something is known, you shouldn't be allowed to conceal it.

Neil Holtzman: Well, let me answer the question on two levels. First, the matter of insurance companies, government agencies, organizations unrelated to the person having access to that kind of information and I would argue here that genetic information is not much different than a lot of other information that is, usually inadvertently and unknown to each of us, released to a variety of organizations. Our medical records, although we might like to think they're confidential, really have many ways in which information on them can be released to a variety of organizations. There are ways through your driver's license. Many states require a social security number on the driver's license and social security numbers are used widely by a large number of organizations. Access to social security numbers and your identity through your driver's license is possible and when people get that they have access to a wide range of information about you that is non-genetic.

Now, on the matter of families: there, genetics becomes more unique in that the information that "I am a carrier for a disease" says something about the increased chance that my brothers or sisters might be carriers or might be affected with the disease. There is a serious ethical debate that is not easily answered about whether that information should be made available. I think we have very little empirical information here and I think we can find that in many instances, particularly as people understand genetic disease, that this is nothing they had control over, that it should not be stigmatizing, that most people will be willing to share that information with relatives. If they do not, the question then comes up as what is the responsibility of the physician who administers the test to share that information. The President's Commission on Ethical Issues in Medicine in the early 1980's examined that quite closely and laid out some fairly stringent criteria: Only when this really was life-threatening or life-saving information--and only in such extreme cases--should physicians share that information with relatives if the person tested did not want that information given.

Questioner: All of this discussion seems to be sort of going around the question of a technological imperative in a sense. If you move from a situation where you can't get information to a situation where you have the ability to obtain it, it will be obtained. Then the question is, "Who can know it?" and "What will come of it?" While society is debating the ethics of this, the technology marches on. I wonder if there are any points at which one should put the brakes on until the ethical questions are resolved? How does one do that? Who does that?

Neil Holtzman: Well, I guess I wasn't too clear but I was suggesting that as we march down the Genome Project that I think we need first of all to raise this question about what policies might be developed. How should they be developed? I think we do need to develop those policies before we go much further down that path.

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