I had the pleasure of visiting the dentist this week. My dental hygienist and I end up having pretty lengthy conversations as we catch up on the previous six months. It’s almost like therapy in that you get to lay down the whole time, talk a bit, listen a bit, talk some more. At any rate, we commiserated about our experiences with cancer; I with my near-brush with melanoma and she with melanoma and then some. Due to her history with several kinds of cancer, she is thinking about having her daughter take a look at genetic testing service 23andMe.
The company’s $99 spit kit can generate reports on 256 health conditions and traits including inherited traits, carrier status for those traits, genetic health risks, likely drug responses, and updates on your DNA as they become available. As a recent Fast Company article on the company and its founder Anne Wojcicki notes, 23andMe’s mission is to bring the “power of genetic testing to everyday consumers so they can better manage their own health care, and [to use] the aggregated data from those tests to help doctors, scientists, hospitals, and researchers discover new cures for diseases that emanate from troublesome genetic mutations.”
As I left my dentist’s office, which ironically had just switched from paper to digital, I thought about the likelihood of genetic data ever finding its way into a personal health record or EMR. The Fast Company piece mentioned one doctor who pretty much didn’t want to have anything to do with his patient’s genetic data, which I duly noted she presented to him on sheaves of paper. One is a mighty small sample, of course, and so I can’t help but wonder what other providers think the value of this kind of data has, and how likely they might be to try and incorporate it into a medical record. 23andMe’s terms of service do state that, “Genetic Information that you choose to share with your physician or other health care provider may become part of your medical record and through that route be accessible to other health care providers and/or insurance companies in the future.”
But how will it get there? Is there an interface in the works? A partnership between 23andMe and an up-and-coming PHR or EMR? The company entered into a Parkinson’s study last year with Cleveland Clinic, so it obviously has direct relationships with providers. A news release announcing the study noted that findings from the study would not be placed in Cleveland Clinic patients’ medical records. Why not?
Genetic testing seems to be about empowering patients to take more proactive roles in managing their health today in an effort to prevent what might happen to their health in the future. It would make sense to share these test results with providers who can aid in that journey. I’m hoping providers in the audience can tell me if it makes sense for them to join in their patient’s genetic journey, or if they’re more likely to opt out. Please share your comments below.