Precision Medicine: What I Want

If I volunteer my data, I want the results back–fast. I want to short-circuit the lengthy dissemination of research results currently in place. I don’t just want my data to benefit future generations. I want it to benefit me, as soon as possible.

I want privacy. Explanations that data cannot truly be safeguarded are not good enough.

I want to be able to take action based on what I learn about my genome. I want protections beyond GINA, particularly for life insurance and disability insurance.

I want risk reducing surgeries to be covered by insurance companies in the event of a positive BRCA diagnosis. Right now, they aren’t required to cover it.

I want genetic testing on demand, with second opinions available, and covered by insurance.

I want medical literacy programs, so that patients can fully engage, have truly informed consent, and make good health decisions based on big data. I want doctors to be well educated about genetic issues.

I want far greater recognition of the ways that socioeconomic status effects access to data and healthcare. I want all people to benefit from volunteering data, regardless of socioeconomic status. I don’t want our data making corporations rich while average Americans can’t afford the innovations made from that data.

I want universal healthcare. Economic inequality is the number one public health issue facing Americans right now. There is a very real danger that the masses will volunteer their genomic data but not be able to afford the medical innovations that result from that data. We cannot allow precision medicine to become the healthcare of the rich.

I want genomic data to be shared, not hoarded by corporations as Myriad Genetics has done in the past.

I want to look at the leadership of precision medicine and see more women, more ethnic minorities, more patient advocates. I want women and ethnic minorities to be well represented in the one million volunteer cohort.

I want clear, accessible pathways for patient involvement in shaping precision medicine. I want to be included. I don’t want to be an afterthought. I want to help shape the future of American healthcare.

What do you want?

 

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Followup: prophylactic mastectomy for average women

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I wanted to followup on my previous post about Peggy Orenstein’s article on prophylactic mastectomy for average women with breast cancer because I’m seeing some chat about it in BRCA+ communities that disturbs me.

First of all, some BRCA+ women are getting really defensive about the article, posting things like “PBM saved my life!” or “when I was diagnosed with breast cancer in my right breast, I had a double mastectomy and they found cancer in my left breast too!”

This makes me wonder if these women have actually read Orenstein’s article, which focuses on mastectomies for newly diagnosed women who don’t have a BRCA mutation. There have been many scientific studies about average women without BRCA mutations removing their healthy breast along with their cancerous breast after diagnosis. The scientific evidence shows that bilateral mastectomy does not improve survival rates for breast cancer patients who not have a BRCA mutation–repeat, in patients who do not have a BRCA mutation.

I don’t know why some BRCA+ women are getting so riled up about this. The circumstances of BRCA+ women are quite different from those of BRCA- women, and Orenstein’s argument does not apply to us. She makes it perfectly clear that she’s writing about “CPM” (contra-lateral prophylactic mastectomy for average women), not “PBM” (prophylactic bilateral mastectomy for BRCA+ women).

Secondly, I’ve seen women respond to Orenstein’s article by saying they feel psychologically better having had their healthy breast removed. I’ve written about the psychological reasons for PBM before, and I think psychological well-being is a perfectly valid reason for BRCA+ or BRCA- women alike to choose mastectomy. However, like Orenstein, I’m concerned that average women who are choosing CPM may be doing so without getting all the facts about it.

To me, the problems with CPM are manifold. On the one hand, many women are not familiar with issues surrounding breast cancer treatment and they have to quickly get up to speed right when the clock starts ticking after diagnosis, a moment when they may not be in the best mental state to gain literacy in medical discourses. On the other hand, doctors are not doing a good job of communicating to patients the facts about their risk of recurrence with and without CPM, nor are they doing a good job of communicating options for treatment and reconstruction.

Finally, some women seem angry at Orenstein because they simply don’t want to hear to the facts about CPM.  In Cancer Vixen, Marisa Acocella Marchetto’s friends try to get her to see a top oncologist at Sloan-Kettering, but she keeps avoiding it. Finally, she admits that she doesn’t want to see the specialist because doing so would force her to admit that she has “real” cancer, the kind that requires an expert. In other words, going to a world-class cancer hospital like Sloan-Kettering would force her to acknowledge that her life is in danger.

I wonder if something similar is at play with the backlash against Orenstein’s article. As a lifelong feminist killjoy, I know how pissed off people can get at those of us who speak hard truths. NPR recently ran a segment about a study that showed a surprising number of people don’t even want to know if they have a bad medical condition. This morning I saw one woman declare that Orenstein had a lot of nerve telling her to be well informed when she was such a wreck after her diagnosis, that she had a right to put her head in the sand. How common is this sentiment? Is it the case that some newly diagnosed women don’t want to know all the facts about CPM? Is it mentally easier for some women to just remove both breasts and move on?

The choice to have a unilateral or bilateral mastectomy, whether for prevention or treatment, is highly personal, and I have no interest in telling individual women whether or not they should keep or remove their breasts. But both patients and BRCA+ patients need to make well-informed decisions based on sound medical evidence. For this to happen, the medical industry needs to do a better job of communicating risk and treatment options to women, and women need to be willing to face the facts before choosing whatever option they deem best for their health and well being.