Henrietta Lacks’ genome, and familial consent

Rebecca Skloot has an op-ed in The New York Times, The Immortal Life of Henrietta Lacks, the Sequel. I’ve read it a few times now and I’ll be honest and say I’m not totally clear on some of the points she’s trying to make, so I didn’t have a strong reaction to it. This is in contrast to Michael Eisen, who has a post up, The Immortal Consenting of Henrietta Lacks. He told me on Twitter that he had some exchanges with Skloot (on Twitter) which informed his response, so he probably has more context than I do. Eisen says:

I find the way Skloot’s NYT piece moves back and forth between the historical transgressions against Henrietta Lacks and the contemporary threat to her relatives’ privacy incredibly misleading. I doubt this was intentional – rather I think it reflects muddled thinking on her part about these issues. But either way, by juxtaposing the entirely justifiable empowering of the Lacks family to grant individual consent on Henrietta’s behalf with the desire of the same family to protect its genetic privacy, Skloot is implying that these are one and the same – that we should give ANY family the right to veto the publication of a relative’s genome.

I don’t know if Skloot is actually implying this.* If so, then I disagree with her on this, as I’ve stated in the past. But I do want to emphasize I feel that the op-ed overemphasizes about the power of genes. For example: “Imagine if someone secretly sent samples of your DNA to one of many companies that promise to tell you what your genes say about you. That report would list the good news (you’ll probably live to be 100) and the not-so-good news (you’ll most likely develop Alzheimer’s, bipolar disorder and maybe alcoholism.” It’s a op-ed in The New York Times, so I don’t hold this against the author.

But much of the controversy about this stuff would be diffused if people were more straightforward about the comparative advantage of genetic information over any other sort of information. If, for example, you tell people that you have a health condition which is known to run in families (e.g., breast cancer), then you’re also telling people about your family. To my knowledge there isn’t a tacit social contract that you need to check with your family before you ever discuss you health status, though I could be out of the loop on this.

* Skloot disputes Eisen’s characterization of what she mean to imply.

Source: Discover Magazine – Gene Expression