How you should feel about all this isn’t obvious. It’s not as if scientists are stealing your
arm or some vital organ. They’re using tissue scraps you parted with voluntarily. Still, that of-
ten involves someone taking part of you. And people often have a strong sense of ownership
when it comes to their bodies. Even tiny scraps of them. Especially when they hear that
someone else might be making money off those scraps, or using them to uncover potentially
damaging information about their genes and medical histories. But a feeling of ownership
doesn’t hold up in court. And at this point no case law has fully clarified whether you own or
have the right to control your tissues. When they’re part of your body, they’re clearly yours.
Once they’re excised, your rights get murky.
Kathy Hudson, who has conducted focus groups about the public’s feelings on the tissue
issue, says she believes that tissue rights have the potential to become a bona fide move-
ment.
“I could see people starting to say, ‘No, you can’t take my tissues,’ “ she told me. “All I can
say is, we better deal with the problems now instead of waiting until that happens.”
T
here are, essentially, two issues to deal with: consent and money. For most people, knowing
if and how their tissues are being used in research is a far bigger issue than profiting from
them. Yet when this book went to press, storing blood and tissues for research did not legally
require informed consent, because the law governing such things doesn’t generally apply to
tissue research.
The Federal Policy for the Protection of Human Subjects, also known as the Common
Rule, requires informed consent for all human-subject research. But in practice, most tissue
research isn’t covered because: (i) it’s not federally funded, or (2) the researcher never learns
the identity of the “donors” or has firsthand contact with them, in which case it’s not con-
sidered research on humans. So in the end, the Common Rule doesn’t actually govern most
tissue research.
Today, if doctors want to gather tissues from patients strictly for research purposes—as in
Henrietta’s case—they are required to get informed consent. But storing tissues from dia-
gnostic procedures like, say, mole biopsies, and using them in future research doesn’t require
such consent. Most institutions still choose to get permission, but there’s no uniformity in the
way that’s done. A few hand out enough information to fill a small book, explaining exactly
what will be done with all patient tissues. But most just include a short line in an admission