explores the question of whether anonymously donated (or otherwise obtained) samples of genetic material should be permitted for use in genome sequencing, and whether, once sequenced, the data should be available.
The story originates with Henrietta Lacks, whose cells were taken without the consent of her or her family, back in the 1950s, when she was diagnosed with cervical cancer, and subsequently used in all sorts of scientific research, including that used to develop lifesaving vaccines.
The book written about Henrietta Lacks by Rebecca Skloot
, the same writer penning the opinion piece linked above, The Immortal Life of Henrietta Lacks
,* explores in great detail the history of Ms. Lacks herself, as well as her family, the genesis of human research ethics, how her cells have become used around the world, and how her family didn't know anything about it for over 20 years.
The article in the NY Times discusses whether scientists should have performed genome sequencing on her cells and published the results without her family's consent (no).
It is an interesting conundrum: her cells have been out there so long and used in so many situations, that many think they are anonymous or identity-less. But there is still a requirement to protect the privacy of her other family members, which publishing genome sequencing data does not achieve. I haven't been tracking the conversation, but I have the impression that many think the ends justify the means: Just look how many people have been saved through vaccines! How many life-saving drugs and treatments have been developed! Look how much more we can do with science and genome sequencing!
But privacy is important, and her family is still out there, not anonymous, being affected by publication of data of their family member (data subsequently retracted from the public domain) and by potential unintended results of this data being available.
I wonder whether the horse has already left the barn in this case - and yet, it is essential to emphasize that each of us should have the ability to make choices about what information is shared and what is not. Having worked in research with human subjects, I can tell you that many researchers do not feel it is important to protect genetic material beyond delinking the material from the person's name or identifying factors, and that consent for use of this material beyond the initial research is not required.
What the article above is telling us is that "anonymizing" material from a person's identity is not enough, and that our current laws and regulations are out of date. *I may be biased in that I am interested in human research ethics issues, but I rate this book five stars. It is both biography and essay, engaging yet written in plain language. I may have even blogged about it before? Read it!