Last week STAT First Opinion carried the story of a young woman who learned of her BRCA1 (mutation predisposing to breast cancer) mutation on a 23andMe report. She describes the experience of processing that explosive bit of information in the isolation of her own mind and information network. Contrasting this experience with the confirmation of her status with a Cedars Sinai Medical Center genetic counselor is telling:
I was devastated. But the way I felt was totally different from the way I felt after opening the report from 23andMe. Talking to someone about the results versus reading them in an online report — even after wading through a long tutorial — was the difference between day and night. My counselor was sympathetic and knowledgeable. After she told me the results, she asked me what I needed in that moment. Did I need more information? Time to be alone, or to cry?
As our ability to define genetic risk scales with consumer products, expect this scenario to continue to play itself out. Expect unimaginable dilemmas as individuals take screening and prognosis into their own hands.
Missing from this story is any conversation with a physician or advanced health practitioner. Which makes sense on some level. Few physicians are up to snuff when it comes to helping patients understand the implications of of genetic screening. Genetic counselors are critical in this regard. But missing here is the integration of screening information into a patient’s broader health journey.
As medicine becomes more precise we’ll need someone to help us understand our granularity. Patients will need a health docent of sorts. This is a role different from what we know because patient needs will evolve to be different from anything we currently understand. Physicians are trained to be reactive. We work to fix disease after it’s in motion.
But if training and trajectory fail to prepare physicians for a new health docent role, it will be filled by other professionals who are better prepared for what patients need. Think of a kind of super advanced practitioner or genetic counselor with deeper, broader training. Physicians, in this case, could be relegated to some other role. The market will always meet its needs.
Translation, interpretation and contextualization will evolve as critical pieces of helping patients navigate their health.
Who evolves as the health docent is up for grabs.
Image via William Bout on Unsplash.