Commentary

The ResearchKit link to Henrietta Lacks

Here’s a great point of view on ResearchKit. Should individuals profit from the data they provide to these massive studies? Lisa Suennen, writing for MedCityNews, compares the ResearchKit studies to the story of Henrietta Lacks, whose cancer produced cell lines that are still used today.

At what point will those who contributed their data for free wake up and say, “hey wait a minute, that new drug that made a gazillion dollars this year, they did that with my data; how do I get a piece of that action?”

It’s one thing to agree to contribute to research, it’s another to contribute to some big drug company’s corporate jet.   It would be awfully nice if Apple had figured out a way for those who contribute data to this incredible research effort also have a way of receiving royalties, or at least free iPhone minutes or iTunes downloads or 1 hour on the Merck corporate jet.

It’s a fair question. If your data contributes to a corporation’s profits, can you make a claim to some of those profits? When signed up for GlucoSuccess, I didn’t bother to read the lengthy forms the software displayed. I’ll bet I clicked a button that signed away any rights. But the larger question remains, should I be able to make a claim?

What do you think?

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