The Presidential Commission for the Study of Bioethical Issues is considering today whether to take up an examination now of ethical issues surrounding neuro-imaging and genetic testing. If it decides to do so, Dr. Francis S. Collins, Director of the National Institutes of Health, had some advice on where to focus.
Collins, the lead speaker in two days of meetings in a downtown Washington, D.C. hotel, said he saw three potential areas: (1) genetic discriminations; (2) ethical issues around unexpected findings from genetic testing; (3) and forensic application of DNA testing.
He suggested the Commission focus on area No. 3 because of its importance and the paucity of study on the issue.
“Identifying perpetrators by DNA matching is expanding rapidly,” Collins said. For example, “in the whole issue of surreptitious collection, it is possible to do this with a discarded cigarette or a glass of wine left at the table after a person has left a restaurant. Is there some limit placed on this? Are we comfortable with that?”
He said society may feel OK about collecting DNA samples from the saliva on a wine glass “if a person performed a heinous act,” but what about collection of a DNA sample of someone running for political office, he asked. “It also may be done for making predictions about that individual’s future,” he said. “If someone is running for president, wouldn’t you like to know” about his or her health for the next eight years?
In that case, he said, the ethical issues were not clear. Other ethical concerns in forensic use of DNA samples: tracking those accused of crimes through relatives; making predictions of the possible age range of the perpetrator (some tests now claim to know plus/minus nine years); predicting ancestry of the criminal; predicting physical appearance; identifying recent travel; and assessing the presence of a disease.
In a question-and-answer session, Collins addressed other pressing ethical issues around genetic testing, including those surrounding pregnancy, and how couples deal with information about the risk of disease pinpointed by the tests.
“It’s an enormous health care challenge, a looming potential problem,” Collins said. “But it’s also an opportunity for prenatal counseling. These issues generally happen after pregnancy, but many couples would like to know about a long list of recessive diseases prior to pregnancy.”
That led to questions about whether doctors and researchers should tell patients about results that were not related to a specific test. What were the ethics in that?
Commission member Dr. John D. Arras, Porterfield Professor of Biomedical Ethics and Professor of Philosophy at the University of Virginia, commented: “There’s a conflict of values here, with regard to access to all this genetic information on the marketplace. It seems the more expert you get, the more wary you are of information you give to people. On the other hand, you have a free market libertarian sensibility of, ‘It’s my body, my stuff, and I should have access to it.’ You talk about the need for education and I’m just wondering whether there’s room for regulation as well. What do we do with all this information floating around out there?”
Collins said there should be a need for regulation of products that make fraudulent scientific claims on genetic testing results. He said the NIH was establishing a genetic testing registry that would examine the foundation of claims made by companies. And what about giving people information outside the focus of the test?
“My personal view is it’s hard to take a stance that is paternalistic, such as ‘There, there, it’s bad for you to have information about yourself because this is information that you cannot handle.’ That does not feel right. But we do have a responsibility as a society to protect against bogus information” made by companies.