Check out this fascinating article in Fast Company authored by Christina Farr debating ethical issues in how biobank donors should be compensated if their DNA leads to a blockbuster discoveries by big pharma. One of the case studies examined is donors whose rare genetic makeup has led to a potential new class of breakthrough cholesterol lowering agents, PCSK9 inhibitors. How much should we pay biobank donors? How do we entice the masses and special populations to donate blood and tissue samples to biobanks?
A recognized bioethicist, Hank Greely shares in the article, “medical research is almost always about collectives, statistics, and probabilities, not about any one person.” If a person has a rare gene that helps humankind, and they are part of the massive samples and datasets studies, then is that just part of the process or should that person be compensated by a University or big pharma? Interesting debates with no clear answers.
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