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Ethical Conundrum: Who owns your cells?

Monday, February 20, 2017 7:51
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Sometimes the tech threatens to overwhelm the law. For example, we’ve posted before about who outlay owns the data that various medical devices gather:

Hugo Campos has [an ICD] buried in his chest to help keep him alive. But he has no idea what it says about his faulty heart.”

That’s because it was being collected (and analyzed, and perhaps sold to 3rd parties) by the manufacturer.

But the issue actually predates all these newfangled gizmos, as we learn from this article that was tipped to us by FoIB Holly R:

The eldest son of Henrietta Lacks doubled down Friday on his efforts to reclaim his mother’s legacy, calling for a congressional inquiry into Johns Hopkins Medicine’s unauthorized use of her cells.”

It seems that, way back on 1951, Ms Lacks went in for some (routine?) diagnostic testing, which required harvesting some of her cells for analysis. Although she passed away a short time later, her cells live on and “have become the most widely used human cells that exist today in scientific research.”

And therein lies the rub: Johns Hopkins (which collected and analyzed the cells) reaps significant financial rewards as a result of their unique access to them. Ms Lack’s estate doesn’t think this is right, and is looking for some kind of government intervention. There are other issues, as well, but it seems to me that it really boils down to essentially the same question we asked in Mr Campos’ case: who owns the data (or the cells from which the data is derived)?

It seems to me that, since Ms Lacks sought treatment, and (presumably voluntarily) gave Johns Hopkins permission to use those cells. So it’s not really clear to me what standing her estate has here to interfere.

So, what do our readers think?

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