in their jobs." And, Whittemore said, although her association has been successful in recruiting victims of tuberous sclerosis and their family members to take part in research, she has found that the fear sometimes overrides the patients' desire to help find a cure or treatment for the disease. "In the families that I talk to there have been a few who have refused [to take part in genetic research] because of the fear of that information getting out to the public."
Such worries are just one part of the public's uneasiness with genetic testing, said Paul Berg, chairman of the Beckman Center at Stanford Medical Center. "In addition to the concern that the results of genetic testing could be used to deny health care coverage, there are other issues that concern many people. One of these is the psychological impact of knowing of their predisposition to serious disease. One frequently hears, 'How am I going to deal with knowing that I have a predisposition to such and such? I have to worry about my children, and how to deal with my sister who carries the same gene.' And so on and so forth. There are all these emotional issues. Health care is important, but this other issue which is a little harder to put your finger on, is out there. It seems to me that the privacy issue is not only whether somebody else will know, but how the tested individual is going to deal with it?"
The public uneasiness may be understandable, but it is also exaggerated by the tendency of scientists and others to focus on genes to the exclusion of the other things that go into making a person. So perhaps, said Shirley Tilghman, a molecular biologist from Princeton University, the best approach will be to remind the public that although genetic research is an incredibly powerful tool, it is far from omnipotent. "Genes do not determine who we are," she said. "Genes are essentially a blueprint and on that blueprint many, many different houses can be built. I think there is an enormous danger as we head down this road towards defining ourselves by our DNA sequence that we will leave the impression with the public that you are who your genes are. You are not who your genes are. It is a much more complicated dynamic than that, and I think the public acceptance of knowing more genetic information will be directly proportional to the degree to which they understand that basic underlying fact."