Uninformed Doctors Struggle With Ethics of Genetic Testing
With "hundreds" of genetics tests now available, the Washington Post reports that doctors are using them more frequently, but too often do not understand how to counsel patients and interpret results. Genetic testing has "already tripped ethics alarms" as many fear that results could be used to discriminate against patients, but the Post reports that "far less attention" has been given "to the ... challenges of educating health care professionals" on how to use genetic tests. Nancy Wexler, professor of neuropsychology at Columbia Presbyterian Medical School said, "As complicated as the laws are on discrimination in the workplace and health insurance, still they are laws and society will work through that." She added, however that the "gut psychological issues, the potential emotional burdens of genetic information, are so much more difficult. If the information sends you through the window to the Hudson River below, then it won't matter if you were going to be discriminated against."
Lack of Information
While no agency or organization keeps tabs on the number of "wrongly conveyed or interpreted" genetic tests, researchers say the problem "is big and getting bigger" as surveys indicate that doctors are often giving patients the wrong advice. The Post reports that, based on misinterpreted test results, doctors are advising some patients to forgo "preventive care" while "scaring" other patients "who have little to fear." The public also is "mostly ill informed about genetics," and reports show that "exaggerated fears" about genetic diseases "motivate many people to get unnecessary tests" and even surgeries. Even when results are communicated accurately, many patients still misconstrue test results. One study of 282 women with family patterns of inherited breast cancer found that after counseling, 31% had an "accurate perception" of their risk for cancer. But, after one year, the number dropped, suggesting that without "further counseling women reverted to their old, inaccurate perceptions." Complicating the situation, the Post reports, is the fact that genetics is a "family affair," since test results for one person can "quickly snowball into a crisis for dozens of relatives." The "ethics of when to share results are still under construction," the Post reports as ethicists are pondering whether doctors are "ethically obliged to pass [genetic] information along" or "if that would be a violation of the first patient's confidentiality."
Despite their own lack of knowledge and "vast sea of public misperception," doctors are beginning to question "who is qualified to give advice about genetic tests and interpret results." Doctors may not be the best choice to take the lead on the issue as "medical economics may preclude physicians from being ideal sources of ... information and counseling." Alan Guttmacher, senior clinical adviser to the director of the National Human Genome Research Institute, said, "The dirty little secret here is that most things genetic are really time-intensive, and every study agrees that you can't make a lot of money talking to people." While genetic counselors have the best training, there are "far too few to do the job." Many researchers believe "specially trained nurses" may be part of the solution. But, with many in the field "still learning their art," experts say "the most important lesson is that a glimpse of one's genes is not for everyone."
One solution already being proposed to curb some of the problems and issues caused by genetic testing is the practice of informed consent. A federal advisory panel is recommending that people sign an informed consent form before undergoing testing, since, as the committee points out, genetic testing is "still an experiment" and people are still attempting to learn "how to glean information from people's genes and to communicate" that information effectively. But, the Post concludes, "rare is the experiment in science that is not preceded by failures" (Weiss, Washington Post, 12/2).