Alexandra Stern is a University of Michigan historian of medicine and expert on eugenics who lectured at the University of Houston this spring on disability rights. The author of the forthcoming "Telling Genes: The Story of Genetic Counseling in America," she spoke with Chronicle medical reporter Todd Ackerman after the lecture about the limitations of genetic medicine, whether to take advantage of for-profit company genetic tests and how eugenics didn't die out with the Holocaust.
Q: In the history of medicine, how is the early 21st century likely to be remembered? Is this the genetic era, or is that still to come?
A: The genetic era has begun, but the big question is what we do with the information we now have to help people - to what extent will it lead to cures and more effective therapies? History shows the expectations and promise of a new era's technology are often much greater than what ends up being delivered.
Q: So you think we're likely to be disappointed?
A: Unfortunately, yes. We're a society in which people are interested in their DNA, how genetics affects them, but also want quick solutions, primed by the great progress we've seen in medicine from, for instance, vaccines and antibiotics. But those magic bullets don't translate well to genetic medicine. I don't want to come across as suggesting there won't be great outcomes, but the idea that we'll simply be able to decode the genome, tailor medicines to a particular person based on their genome and cure chronic disease I think there will be a lot of unmet expectations along those lines.
Q: How much are people receiving genetic diagnoses at this point?
A: Genetic tests or diagnoses are being offered in more and more areas of clinical medicine - from neurology to cardiology to oncology. But you're probably talking about those for-profit companies doing genomic testing that return a whole scorecard of probabilities of developing certain conditions.
I think people are increasingly seeking those out and that the problem is that what they get back is unfiltered. People not only need help deciphering their information, they also need help, from a genetic counselor, dealing with the psychological decision-making quandaries they face as a result of genetic testing, how to cope if you have a higher-than-average probability of developing, say, Alzheimer's.
Q: Has enough attention been paid to ethical questions raised by the coming genetic era?
A: It depends on whom you're talking about. Discussions tend to be very fragmented: bioethicists amongst themselves; scientists amongst themselves; disability rights people amongst themselves. But as a society are we having broad-based discussions about the ethical implications, what the priorities should be and what the changes mean for people with disabilities? I don't think so.
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