Easier access to genetic testing causes controversy

Posted: 10:33 PM EST Feb 13, 2013

Genetic testing is a cinch to provoke debate. The controversy has jettisoned in the last few years as the direct-to-consumer market has expanded. On the one hand it makes information more accessible to the masses. On the other that information is unfiltered.

And that was the impetus behind Wednesday night’s Town Hall Lecture series co-sponsored by the City of Bethlehem and Lehigh University’s South Side Initiative entitled “Direct-to-Consumer Genetic Testing: What’s In It For You (Or Not)?

Dena Davis, a Lehigh University chairwoman in health and professor of religious studies, lectured on the subject and showcased various websites to educate those in attendance and to frame the debate.

“There is something among most people about genetics that has the glow of reality,” Davis noted as rationale behind the interest in acquiring such personal information. “And I say that for a few reasons. One is that it is science and two is that genetics are unchanageable.”

By embracing the concept that “knowledge is power,” human beings can foster a different relationship with genetics and even themselves. For example, when therapies or interventions become available for what is currently untreatable, people will be aware of their genetic profile, and thus in a better position to treat it in a timely manner.

“Traditionally doctors have been pretty stingy with medical information,” Davis noted in showcasing the typical medical relationship in the past. “…Over time an evolution occurred and starting in 1993 prescription drug companies marketed directly to consumers.”

Today websites, such as 23andme.com, allow people to “explore their own DNA” by testing for more than 100 traits and diseases for a very modest fee, according to Davis. The websites allow individuals to bypass traditional gatekeepers to an even greater extent than ever before.

However there are always two sides to every coin and such is the case with direct-to-consumer genetic testing, she said.

“In the past there was at least some structure to it,” Davis said.

Part of that structure was the perspective a professional well-versed in accurately analyzing and addressing the information could provide. That lack of wisdom in deciphering the data could lead a person to seek “potentially destructive treatments” and make “bad choices” when their risk for disease is actually quite modest. In addition, there are often inconsistencies from company to company in their results.

Davis played the debate straight-down the middle, offering no distinct opinion on where she stood.

During the question-and-answer session with audience members following her speech, Davis turned the tables and posed her own question to them.

“What do you think is the number one thing people don’t want to know about their genetics,” she asked.

The answer:

“Dementia,” she replied. “That really scares people.”