Thread by @JSheltzer

The brilliant #HeLa movie ends with this bleak image. And it’s worth thinking about what this implies in 2017:

1) The NIH Common Rule does allow the use of de-identified, discarded tissue. But this means something very different in 1951 and 2017.

As shown by @erlichya, @mgymrek, and others – it’s possible to re-identify discarded tissue with DNA sequencing + public genealogy databases

If even a distant relative has contributed to one of these projects, samples from your HIV test or cancer biopsy could be linked back to you

2) iPS technology also has huge implications for what “discarded” means. It would be HIGHLY unethical to do so but theoretically

you could take a euploid primary cell line from discarded tissue, covert it into iPS cells, and make a living, breathing human being from it

What does “discarded tissue” mean when we have the technology to make A NEW PERSON from every non-cancer tissue biopsy?

there are dedicated scientists and bioethicists who deeply study these questions - and I'm admittedly not one of them

but, on a personal level, it feels like the current standards in the NIH Common Rule for protecting patient privacy are not sufficient.

There are also strong arguments against increasing the barriers to discarded tissue research presented here: nytimes.com/2017/04/21/opi…

I don't know the answers. But thanks to @LacksFamily and @RebeccaSkloot for increasing public attention of this crucial, divisive question.