Research Worth Watching: the Precision Medicine Project

Usually I use this space to tell you about some new molecular finding that changes the way we think about breast cancer. But after two trips to the East Coast this month to talk about the President’s Precision Medicine Project, I thought I should bring you up to date on what this is and what it might mean for all of us. The basic concept of precision medicine is that our current ability to map a person’s genome, as well as the mutations in their cancer or related to another disease, gives us a new opportunity to figure out how to precisely treat a disease. In other words, they will not only figure out what mutation your cancer has but also whether you have particular genetic changes that influence how you might respond to certain drugs used to treat it. While it sounds exciting it is pretty much hypothetical at this point having had a few cases of people with cancer who have benefited. In addition to the ability to mine the maps of DNA, RNA, and proteins related to diseases, the Precision Medicine people are also eager to mine electronic medical records to see if they can find patterns of disease or health. All of this is possible because of the conflation of new cheaper technologies to do the molecular analysis and our ability to mine Big Data for patterns. It is potentially very exciting but I worry that we may be getting ahead of ourselves. My concern is that we often focus on using what is available rather than what make sense. I was part of the TCGA Advisory Panel for breast cancer and noticed that they were using available samples from breast cancer surgery to do their analysis and were using the adjacent tissue as normal. While this sounds okay on the surface, we still don’t know whether breast cancer is a disease of the breast, the ductal system, or both (we are working on that). That means that adjacent tissue may not really be normal at all. You could say the same thing about electronic medical records. These were not devised to collect research or clinical information as much as to facilitate billing. Although I left clinical practice before they arrived, my wife, who uses them regularly, says that the default it to say everything is normal and then to write the problem in the notes section. We need to be careful that we are not in a situation of “garbage in and garbage out”. That being said, there may be some remedies to these concerns. The biggest is to bring patients and the public into the process. One project is for patients to get a copy of their medical records ( and in one Robert Wood Johnson Foundation study, patients were allowed to correct their medical charts!  ( Finally the Genetic Alliance along with Private Access has developed a system in the PEER Program ( to allow you to share as much or as little of your health data with particular researchers, and this is being used by several patients groups. One project that is part of the Precision Medicine Project is a million person cohort. This means data on a million people who are willing to share their medical records, and likely their genetic information as well, is being collected in a way that can be mined for discovery. It is like our Health of Women (HOW) Study™ on speed! We are considered the poster child for building a new cohort that is completely online and the Love Research Army is the envy of many groups. This new Precision Medicine Project has a lot of potential and it will take all of us to make it work

Love Research Army

We combat the disparities that exist in research by challenging the scientific community to launch studies that are as inclusive and diverse as the people that breast cancer affects.

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