Dena Davis explores the ethical implications of direct-to-consumer genetic testing.
For less than $100, anyone with an Internet connection and a healthy dose of curiosity can play fortune teller and find what the future may hold. Direct-to-consumer genetic testing is now available to the masses, promising a full genetic profile with a simple cheek swab and at-home test kit.
But is it helpful or harmful to know our genetic future? That was the question that Dena S. Davis, Lehigh’s Presidential Endowed Chair in Health in the Humanities and Social Sciences, posed last week as part of the South Side Initiative’s (SSI) Town Hall Lecture series.
The answer, of course, is as complicated as that famed double helix.
Davis, a professor of religion studies, has spent her career researching and teaching biomedical ethics, navigating the murky waters of what is wrong and what is right. A few years ago, the question of direct-to-consumer genetic testing wasn’t even an issue.
“There’s been a revolution in the way we access patient information,” Davis said. “Years ago, medical professionals were the gatekeepers. Without the Internet, it was difficult to get information unless it was directly from a doctor.”
A peek into the future
Now, prescription drug companies market their wares directly to the public and sites like WebMD offer diagnoses for everyday maladies.
The latest in this “democratization” of health information is direct-to-consumer genetic testing, allowing everyday citizens to access raw data on their genetic makeup.
In some cases, Davis said, knowing your genetic predisposition for developing certain diseases can lead to positive lifestyle and dietary changes. Case in point: National Institutes of Health Director Francis Collins, who discovered his relatively high genetic risk for Type II diabetes, started walking more and riding his motorcycle less—resulting in a 20-pound weight loss.
But what happens when this knowledge leads to genetic determinism?
“Knowing your genetic predisposition can cause you to be fatalistic and make poor life choices,” Davis said. “If you find out you have a slightly higher-than-average chance of developing a certain disease, do you not decide not to go to grad school?”
And what about broader societal implications? “Some coaches are mandating genetic tests so they can predict the likelihood of teenagers succeeding at certain sports,” Davis said. “The idea is, ‘don’t waste my time if you’re not genetically programmed to do this.’”
Another factor is the inherent uncertainty in the results—a fact underscored by Seth Moglen, SSI co-director and associate professor of English.
“As Davis pointed out, having this knowledge is often less conclusive than we might imagine— and its implications for our lives are often quite unclear,” Moglen said. “If we learn that we have a higher-than-average predisposition for a medical condition that has no effective treatment, does this doom us to living in fear and anxiety?”
Davis said the issue is indeed complex, especially since many people see genetics as infallible—even when the results are ambiguous at best.
“There’s something about genetics that has this glow of reality,” Davis said. “And that can be really dangerous if it crowds out other useful information.”
The SSI’s Town Hall Lecture series creates a forum for the university and local community to discuss pressing issues. The next lecture, concerning health equity in the Lehigh Valley, will be delivered by Bonnie Coyle of St. Luke’s University Health Network on March 28 at Bethlehem City Hall.
For information on upcoming lectures and programs, visit Lehigh's events calendar. Follow Lehigh on Facebook at facebook.com/lehighu and on Twitter at @LehighUNews.