The President Wants To Get Into Americans’ Genes. Here’s Why It Could Be Awesome
President Obama recently asked Congress for $215 million for an initiative to collect genetic information and combine it with health data with the goal of creating treatments tailored to individuals – or precision medicine. The proposal has bipartisan traction, and is expected to be one part of the President’s $4 trillion budget that's likely to pass in both houses.
We spoke with bioethicist Dr. Eric Meslin to learn more about the implications of the President’s plan. Meslin’s team at the Indiana University Center for Bioethics has been conducting research on a number of ethical issues that patients and researchers face in the era of precision medicine, such as how to obtain informed consent from patients to donate tissue samples for genetic studies, or how much control patients have over who has access to their medical records. He’s also been collaborating on these issues with colleagues in Europe and Canada.
Read on for a condensed, edited interview, or click below to hear the entire conversation.
Sound Medicine: We’re seeing the intersection of lower costs for genetic sequencing and the power of big data. Is the timing right for the Obama Administration’s proposal?
Dr. Eric Meslin: It really is. And adding to that big data story are two streams that are now crossing very nicely. One is, as you say, the ability to look deeper and deeper into the human genome and find more and more things at lower cost. Plus the long-standing interest that we've had in electronic health records and the ability to gather health information more generally. So when you've got genetic information from that little drop of blood that you might give, or a tumor sample or something else, and then you match it against a family history and health records, you've got a really powerful tool for diagnosing and treating disease.
We've had this ability for at least ten years or so. So the technology is not brand spanking new. But I think the more interesting part of the announcement by the President is that we're probably going to enter the world that many other countries, including the United Kingdom have entered. And that's involving more and more people in what is essentially a large database, a large data bank where people can sign up to participate in a pretty big study.
SM: More than half the budget is going toward recruiting 1 million volunteers. What will they be asked to do, and what really will we get from that?
EM: You've had large studies going on for many years, such as the Framingham Study, and the Nurses Study. There are many longitudinal studies where we've tracked people on their health. What this is doing is it's adding a genetic component to many of those existing studies, and then creating another one on top of that.
So for example the United Kingdom has this large and very active project called the U.K. Biobank, where five hundred thousand Britons agreed to roll up their sleeves and give a blood sample or a cheek swab, and they will go into a large repository where scientists, with ethics approval, can go in and learn things. So not to be outdone, we're going to have a million.
It's not like some space race - whoever has the most people wins. [But] whoever has the most people in their banks can actually learn more specific information. So we might find that if someone with a specific kind of cancer is actually more responsive to a specific drug than someone else. You can only learn that with more and more and more data. And in the U.S, we've got some of the wicked fastest computers in the world to do all these calculations.
SM: In the U.K. you have government medical care, and it really doesn't matter if you have some problems, because the insurance company isn't going to deny you care. How is it different here?
EM: In the U.K. it's the same issue. I don't think this is a uniquely American problem. Anytime you create large repositories of personal health information, you raise the specter of not just privacy and confidentiality--I personally think the privacy issues can be handled with some good regulation and guidelines--[but] there are also issues around commercialization: who is going to be using this information for what purpose? Again, I have no problem with good collaborations between industry and universities, but we have to have proper rules in place and we have to make sure everybody knows who's doing what.
SM: We hear a lot about targeted therapy when it comes to cancer issues. Is that the area where we might see the first breakthroughs?
EM: That's the main announcement that the President made, and there have since been further announcements by the NIH and others, describing cancer as one of the most important areas, for a couple of reasons. First of all, cancer doesn't discriminate. Lots of people get cancer, and there are lots of different types. But there are also a number of cancers that are relatively rare. And there has been this fear that since there really isn't a market to treat drugs for people with a pretty rare cancer, there's not going be much development.
Using these high-technology ideas and actions by scientists, we're probably able to do more for more cancers now than ever before. Maybe, possibly living up to Richard Nixon's almost infamous statement that we're "declaring a war on cancer." Much as I don't like the military metaphor, I think we're a lot closer to conquering some of those diseases than we were before.