Why Hasn't Clinical Genetics Taken Off?

Sultan Meghji

Insiders to genomics are looking around and, generally over a tasty adult beverage, bemoan the lack of forward progress on the clinical side of adoption. Why haven clinical adoption rates gone up faster? What’s making this hard? I’ve become frustrated over the last few years, raising a significant amount of money across a number of companies, all trying to speed up the scale of adoption in the non-sick population. Looking back, looking around and seeing how the current landscape of startups and new activities in clinical genetics are being run, I’ve come to the following conclusions.

1.      Why should I (the patient) care about my genetics?

It’s expensive. It’s confusing. It doesn’t give me any actionable information. We’ve seen how quickly the alpha consumers are taking up activity trackers and other actions-oriented technologies; the lack of an equal demand in clinical genetics is a clear indication.  The general population just doesn't see the point in utilizing clinical genetics and are not asking for it.

2.     The case hasn’t been made to the physicians

The vast majority of front line caregivers acknowledge the technological advances but just aren’t convinced that genetics would make a useful differentiation in healthcare. The current environment has placed an onerous burden to change the standard of care, with the exception of a new pill to replace the old one, usually at a pricing premium. Not too long ago I was talking to the #2 at a major regional medical center (an oncologist by training and practice) and the quote from him I took away was, “..clinical genetics doesn’t matter to me in my practice. There is no proven utility to the vast majority of our patients.” 

3.     The front line caregivers need to be (re)educated

Given that most front line caregivers do not have an education around molecular biology, the entire dialogue around genetic information needs to start at scratch and there isn’t a common platform to do that.  Any easy way to discover this is to ask your primary care physician if (a) they took molecular biology in college and (b) how many molecular tests they’ve ordered this year. For far too many the answers are “no” and “zero”. 

4.     The hospitals, clinics and labs which the physicians have access to don’t offer full service, cost effective solutions

Another interesting question to ask your PCP is what tests are actually available now. Is there a test that they can order right off the menu from their office/lab/hospital/clinic? Again, for the vast majority of doctors, even if they had an educated and motivated patient and an educated, motivated and willing doctor, the local infrastructure doesn't support this. The one shining light of hope is for people with chronic or specific issues, especially around cancer. 

There is a tremendous amount of effort being put into “4” and the other supporting systems, but until 1, 2, and 3 are resolved we’ll never see the broader impact we hope for.  There are a few interesting movements out there, but right now change can be measured generationally. A ray of hope comes from the current pain in the public educational system where k-12 is using resources like the Khan Academy, which has a nice introductory set of content on genetics.

In an environment where most PCP’s are between the ages of 50-55 (AMA), coupled with the increasing age of the general population, we find ourselves in a situation where most people inside the medical ecosystem do not understand genetics.  This is true both on the patient and the provider side.  The ecosystem is currently focused on financially oriented activities (ACA, playing nicely with Medicare/Medicaid and the health insurance providers) vs. actually integrating new useful technologies.  

Inside the industry, we still talk about the lack of adoption as a scientific or techincal issue, when actually this "last mile" issue is with doctors and the average person just not seeing the value. We need to do a much better job of educating the general populace as to the value of genetics in their daily lives. 

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