By Rebecca Skloot
The New York Times
Originally posted December 30, 2015
Here are two excerpts:
What’s riding on this? Maybe the future of human health. We’re in the era of precision medicine, which relies on genetic and other personal information to develop individualized treatments. Those advances depend on scientists working with vast amounts of human tissue and DNA. Dr. Francis S. Collins, director of the National Institutes of Health, believes involving donors in this process gives scientists more useful information, and can be life-changing for donors. In announcing plans for the $215 million Precision Medicine Initiative, which he sees as a model for other future research, Dr. Collins said, “Participants will be partners in research, not subjects.” But people can be partners only if they know they’re participating.
People have told me by the thousands, and numerous public opinion studies find the same: They want to know if their biospecimens are used in research, and they want to be asked first. Most will probably say yes, because they understand it’s important. They just don’t want to find out later. That damages their trust in science and doctors. It makes them wonder, what else are you hiding from me?
People tell me this because I wrote a book about Henrietta Lacks, a black tobacco farmer whose cancer cells, taken without her knowledge in 1951, are still alive in laboratories worldwide. Those cells, code-named HeLa, were the first such cells grown and one of the most important advances in medicine. But they came with troubling consequences: Her children were later used in research, their medical information was published, and the HeLa genome — including personal information about Mrs. Lacks and potentially her descendants — was sequenced and posted online. All without the family’s knowledge.
The article is here.