Institute For The Future

Preparing Students to Navigate Genetic Risks

A new training program at Beth Israel Deaconness aims to teach medical students about genetics through fairly nontraditional means: Ask medical students to get their own genetic tests. The hope is that by ushering medical students through the testing process, they will have some personal experience in trying to navigate the uncertainty of genetic testing that will help them treat patients more effectively.

As the Boston Globe notes, the new program signals a growing recognition among doctors that they need to begin more actively preparing for a future where genetic testing is common, even though current testing is still pretty limited.

 

But today, the results can be hard to interpret and can mislead patients - and scientific understanding of the genetics of common diseases is still evolving - so the tests have drawn concern and opposition from much of the medical establishment. As the science races forward, in the lab and into the marketplace, doctors are realizing they need to be ready to assess the information and assist their patients.

“We can bury our head in the sand and pretend it’s not happening, we can suppress the information and tell patients not to go near it, or we can figure out strategies to play a constructive role as this new era of genomic and personalized medicine rolls out,’’ said Dr. Mark Boguski, an associate professor of pathology at Harvard Medical School who will be one of the instructors of the class. “That’s what we’re trying to do: prepare our trainees - not because the technology is ready for prime time today, but people are using it, and it’s clear it’s going to play a role in the future.’’

 

Of course, it's great to see medical schools preparing their students to deal for data that will become increasingly important in the next few years. As valuable as this type of preparation is, I'm inclined to think that the more difficult, but also more critical challenge, is to prepare every day people to navigate a world in which odds of future disease risks shape day-to-day decision-making.

Dana Waring and Ting Wu, founders of the Personal Genetics Education Project, argue that teaching genetics should focus on high school students. After all, they note that:

 

Let’s assume that predictions are correct, and genome sequencing will be available for less than $1000 US, or equivalent, within five years. If so, current high school students will form the first generation to come of age and face, en masse, the opportunities and consequences of personal genetics. They will be securing first jobs, buying insurance, finding partners, and starting families just as genome sequencing becomes mainstream, allowing them to know themselves, their partners, and their children in unprecedented detail. Will they be prepared?

 

 

In other words, the challenges will involve helping high school students get prepared for much more detailed and quantified notions of self. But while those notions of self will be quantified, they'll be measured in degrees and odds of risk, which are notoriously tricky to communicate.