I've been meaning to post about this for several weeks, but as we all know, things have been a weee bit hectic. But now, finally: News on the informed consent for using tissues in research front.
Since the 1960s, US law has mandated that all newborns be screened for
genetic diseases. What most people don't know is that those samples
are often stored and used in future research without the knowledge of
the parents (or, obviously, the children). I write about this in the afterward of my book, which is of course directly related to this issue.
For decades ethicists, scientists, policy makers have been debating whether consent should be required for
storing "discarded tissues" for research, and recently the issue
made it to the courts (again) when a group of parents in Texas
and in Minnesota learned that their children's samples were being
used in research without their knowledge. The parents sued, and a court in
Texas recently ruled in favor of the parents, ordering the state of Texas to destroy more than 5.3 million samples taken from children and stored for research without consent.
The possibility of an outcome like this has long worried scientists: If
everyone whose tissues are being used without consent started demanding that their samples be destroyed,
it could be a disaster for science (and in turn, everyone, since much of the research done on those samples results in treatments for diseases, and other important advances). But at the same time, it's pretty clear that people want to know when their tissues are being used in research, though the majority will likely grant permission. Texas has adopted an opt-out program
that gives parents the option to say they don't want their children's
samples stored for future research, and by last month, only about 7,000
parents out of 25,000 opted-out.
It will be interesting to see what happens as a result of this case --
it could set a legal precedent for other states, which could mean we'll
see more and more samples destroyed. Or it could force a more
complicated discussion about regulating all tissue research on a
federal level in a way that requires consent for the future, but
doesn't involve destroying billions of stored samples.