What are some of the other barriers preventing us from realizing the full potential of precision medicine?
Consumers have some legitimate fears about how their genetic data can and will be used. Because genetic information is unique, we can’t de-identify it in all situations, so there’s more potential for discriminatory practices.
For many people, there are still real barriers to accessing precision medicine, both in terms of testing and sustaining their treatment plans. Going back to the data divide, access to genetic testing is still tough. A test from 23andMe can be shipped to you, but there’s still a cost associated with that, and it’s not the same as whole genome sequencing. The costs of sequencing tests have dropped significantly, but they’re not as widely covered as I’d like to see. Hopefully, we’ll get to the point where these precision diagnostic tests are covered by all payers.
There’s also still a potential problem if I go to my care provider and they haven’t been trained sufficiently on genomic data or how to incorporate it into treatment. To get the best outcomes, they need to know which tests to use and how to use the diagnostic information to map the right treatment for each patient. That educational piece is so critical, but you hardly ever hear about it.
What is keeping you up at night, and how are you addressing these challenges now?
There are things happening in this world that we all need to focus on. We talked about the diversity challenge and how it bubbles up in clinical trials and the workforce. It’s being actively addressed, but not as fast and furiously as we would like.
There’s still a large question around ethical use of real-world data. What does this really mean and what do we prioritize? During the pandemic, for example, we used public surveillance to locate new disease hotspots. Some might feel that such surveillance moves us into a Big Brother situation. There's a balance between public health interests and privacy, and I don't know if we know where that line is anymore.
These public health initiatives are for the greater good, but we also need to acknowledge that the data from those public health programs can also cause harm if the use cases change. For example:
- What transparency do you need to find that right balance?
- What sort of risk mitigation strategies are required?
- What sort of policies and clarity will make more people comfortable participating in programs like 23andMe?
These are all important questions that policymakers and health care industry stakeholders must grapple with.
What excites you about what’s happening in precision medicine, and does any of that alleviate some of the concerns you described?
The ability to tailor a treatment plan based on a patient's circumstances, including social determinants of health and an individual’s unique biology, presents a tremendous opportunity for better clinical outcomes across the board. We know these factors can play a critical role if people can access and adhere to the treatments.
Despite all the recent innovation, it’s important to remember that we're still at such a nascent stage in terms of unlocking the potential of what we can do with both precision medicine and RWE, especially as these worlds start to converge. What we're doing now is addressing problems we had in the old model.
We haven't even begun to reimagine what the clinical care and research paradigms should look like. For me, I picture a closed feedback loop where every person is a walking clinical trial — with their consent, of course. In that future, we're constantly collecting and analyzing data about people in real time, whether it be from their nutrition or medication plans. All these plans would be tailored to the needs of patients more fluidly, so they can achieve what optimal health means for them
Because so many aspects of precision medicine research and application are still novel and changing so fast, most life sciences organizations are still working through how best to pull it all together. But it's an exciting time to be able to do some really cool things in the not-too-distant future.
Disclaimer: This interview represents the opinions and views of Chris Boone and does not necessarily represent the views, opinions, policies or positions of AbbVie.