This past weekend I spoke an amazing conference called Medicine X. My goal at this conference was to explore the intersection of the ePatient movement and BRCA. If you have never heard the term ‘ePatient’ before, go here and listen to ePatient Dave speak before reading any further.
So you just watched the talk, right?
RIGHT! The patient movement has a phrase which I have found particularly powerful for the BRCA community: Gimme my damn data. The end of my talk at Medicine X I concluded with the following image:
Here are a few points on clinical decision making and BRCA:
- While BRCA may be cited as the tip of the iceberg in personalized medicine, our healthcare and medical system will NOT be equipped to make genetic testing a reality on a wider scale until we change our thinking about participatory medicine and cancer research.
- Up until last year, our BRCA genes were patented by the company that did my own diagnostic testing. While the ruling in this case determined that human genes cannot be patented, the company that held patents on BRCA still hoards a proprietary dataset of our community’s genetic information. I believe this directly holds back our community from making progress in cancer research. Hence the phrase…gimme my damn BRCA data!
- Big decisions are made when people have the right information and the support from others who have been there. We should all be able to make informed decisions about our health – but we are facing huge gaps in data in scientific literacy between researchers, the medical community, and patients. We are starting to hear all these stories in the media about ‘unnecessary prophylactic mastectomies’ painting women as uninformed, fearful, and irrational. What we need instead is to empower patients to make difficult choices around genetic testing. We need to give people better tools to make informed decisions. We need to make sure patients have access to genetic counseling and preventative services. We need ethical data sharing practices and policies where patients’ data rights are protected. THAT is what personalized medicine should be about.
- As a society, I don’t think we are talking yet about what it really means to be a Previvor. We talk about ‘previvors’ as this far-removed 3rd party who doesn’t have much of a seat at the table. We hear stories framed in terms of a celebrity…yet, the reality reality behind all of this buzz is a long hard road for women who are navigating difficult decisions with very little support from their own doctors.
- I think we all deserve better. This is why I became a BRCActivist.
Here is the MedX talk: