Posted on October 5, 2015 at 6:48 PM
by Craig Klugman, Ph.D.
The PBS series Open Mind has been on television for nearly 60 years. The program “is a thoughtful excursion into the world of ideas.” The December 30 episode was an interview with Dr. Maria Freire, President of the Foundation for the National Institutes of Health. The host of this show, Alexander Heffner, asked AJOB and BIOETHICS.NET to share this interview, about which he said, “it’s among our most fascinating conversations.”
The conversation is about exploring is about the intersection of biology and technology, harnessing big data to learn about human health and find cures for human disease. This intersection was recently called by President Barack Obama, “precision medicine” a topic which we have written about in this blog. This is the idea that drugs will be developed that work with certain genomes but not others. Thus, there can be targeted cancer therapies based on what genes a person carries.
Freire states that precision medicine is a chance for patient advocacy where individuals can become involved in medical research and helping choose what avenues are explored. She gives as an example an app by Theranos which keeps track of your blood tests performed by some of its in-pharmacy testing centers. The result is that patients can get a blood test at the pharmacy and see the results on their cell phones. Instead of being controlled by testing companies or physicians, the patient controls the test and results. Another company has a blood glucose monitor that connects to your iphone. Such technology is similar to the primary care monitoring we discussed in looking at Robin Cook’s The Cell.
Freire talks about “science now is a contact sport.” I’m not sure that she really means that, because she goes on to talk about the necessity for a team from different disciplinary backgrounds to do science. It’s not enough to simply have a lone researcher pursuing an idea. Science today takes a village. We explored this idea of the Citizen-Scientist and its effects on notions of privacy in this blog as well.
What Freire describes is a democratic science—where everyone participates in determining priorities, submitting materials for research, and even analysis. You can download apps that will use your computer when you are not to help in research. Stanford University is analyzing protein folding using this distributed computing process.
For anyone who keeps up with life sciences research and technology, this interview does not contain anything new. But if you are not up-to-date, or you want to hear about the direction of the NIH Foundation directly from its leader, then this 28 minute vide may be worth your time.