The Immortal Life of Henrietta Lacks

form saying that any tissues removed may be used for education or research.
According to Judith Greenburg, director of the Division of Genetics and Developmental
Biology at the National Institute of General Medical Science, the NIH now has “very stringent
guidelines” requiring consent for any tissues collected for their banks. “It’s very important for
donors to understand what the consequences of tissue research might be,” she says. But
their guidelines apply only to NIH research, and they’re not legally binding.
Supporters of the status quo argue that passing new, tissue-specific legislation is unne-
cessary, and that the current oversight practices are enough. They point to institutional review
boards; the many professional guidelines, like the American Medical Association’s Code of
Ethics (which requires doctors to inform patients if their tissue samples will be used in re-
search or lead to profits); and several post Nuremberg codes, including the Declaration of
Helsinki and the Belmont Report, all of which list consent as a requirement. But guidelines
and ethical codes aren’t laws, and many tissue-rights supporters say internal review doesn’t
work.
Beyond simply knowing their tissues are being used in research, some tissue-rights activ-
ists believe donors should have the right to say, for example, that they don’t want their tissues
used for research on nuclear weapons, abortion, racial differences, intelligence, or anything
else that might run contrary to their beliefs. They also believe it’s important for donors to be
able to control who has access to their tissues, because they worry that information gathered
from tissue samples might be used against them.
In 2005, members of the Native American Havasupai Tribe sued Arizona State University
after scientists took tissue samples the tribe donated for diabetes research and used them
without consent to study schizophrenia and inbreeding. Their case is still pending. In 2006,
some seven hundred new mothers found out that doctors had taken their placentas without
consent to test for abnormalities that might help the hospital defend itself against future law-
suits over birth defects. And in a handful of cases, genetic tests performed on people without
their consent have been used to deny workers’ compensation or health insurance claims
(something now protected against by the Genetic Information Nondiscrimination Act of 2008).
Because of cases like these, a growing number of activists—ethicists, lawyers, doctors,
and patients—are arguing cases and pushing for new regulations that would grant people the
right to control their tissues. And a growing number of tissue “donors” are suing for control of
their samples and the DNA inside them. In 2005, six thousand patients demanded that Wash-
ington University remove their tissue samples from its prostate-cancer bank. The university
refused, and the samples were tied up in litigation for years. So far, two courts have ruled
against the patients, relying on the same logic used in the Moore case (that giving patients
those rights would inhibit research, etc). In 2008 the patients appealed to the Supreme Court,