EMRs Get Personal with 23andMe

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.

About the author

Jennifer Dennard

Jennifer Dennard

As Social Marketing Director at Billian, Jennifer Dennard is responsible for the continuing development and implementation of the company's social media strategies for Billian's HealthDATA and Porter Research. She is a regular contributor to a number of healthcare blogs and currently manages social marketing channels for the Health IT Leadership Summit and Technology Association of Georgia’s Health Society. You can find her on Twitter @JennDennard.

4 Comments

  • Great piece and discussion – the price point on 23andme was all I was waiting for an I have my gene sequence already. Yes there are some risks but that argument falls into the same category as any technology or innovation – it can be used for good and bad…
    – the printing press
    – telephone
    – mobile phones
    …the list goes on.
    The value this information brings far exceeds the downsides and is now an essential part of the data feed to my personal healthcare

  • It is critical that family history and genetic tests (Clinical Genetic tests, not just Direct to Consumer tests) be incorporated into the EMR as structured data which can be used for decision support.

    AHIC developed the core data set needed for family history, which no EMR has yet incorporated.

    HL7 developed the HL7 pedigree message which is suitable for transmitting a complete family history and genetic test results and is usable for clinical decision support. Approved by ANSI and HITSP. No EMR can use that either.

    The HL7 clinical genomics SIG has developed a message to transmit genetic test results and…no EMR has yet adopted it.

    No EMR can run genetic risk models or use genetic clinical decision support.

    None of these fit into Meaningful Use, so it will be years until the EMR have the capability needed to use genomics.

    Non-EMR software is filling the gap, and genetics professionals use these programs outside the EMR, helping to prevent unnecessary suffering and death.

Click here to post a comment
   

Categories