The Immortal Life of Henrietta Lacks

and legally) to put people in the position to do the same as Slavin. Which brings us back to
the complicated issue of consent.
Just as there is no law requiring informed consent for storing tissues for research, there is
no clear requirement for telling donors when their tissues might result in profits. In 2006 an
NIH researcher gave thousands of tissue samples to the pharmaceutical company Pfizer in
exchange for about half a million dollars. He was charged with violating a federal conflict of in-
terest law, not because he failed to disclose his financial interest or the value of those tissues
to the donors, but because federal researchers aren’t allowed to take money from pharma-
ceutical companies. His case resulted in a congressional investigation and later a hearing; the
possible interests of the patients, and their lack of knowledge of the value of their samples,
wasn’t mentioned at any point in the process.
Though the judge in the John Moore case said patients must be told if their tissues have
commercial potential, there was no law enacted to enforce that ruling, so it remains only case
law. Today the decision to disclose this information is up to the institution, and many choose
not to tell patients. Some consent forms don’t mention money at all; others come right out and
say, “We may give or sell the specimen and certain medical information about you.” Others
simply say, “You will receive no reimbursement for donating tissue.” Still others embrace con-
fusion: “Your sample will be owned by [the university]. ... It is unknown whether you will be
able to gain (participate in) any financial compensation (payment) from any benefits gained
from this research.”
Tissue-rights activists argue that it’s essential to disclose any potential financial gain that
might come from people’s tissues. “This isn’t about trying to get patients a cut of the financial
action,” says Lori Andrews. “It’s about allowing people to express their desires.” Clayton
agrees, but says, “The fundamental problem here isn’t the money; it’s the notion that the
people these tissues come from don’t matter.”
After the Moore case, Congress held hearings and commissioned reports that uncovered
the millions of dollars being made from human tissue research, and it formed a special com-
mittee to assess the situation and recommend how to proceed. Its findings: the use of human
cells and tissues in biotechnology holds “great promise” for improving human health, but
raises extensive ethical and legal questions that “have not been answered” and to which “no
single body of law, policy or ethics applies.” This, they said, must be clarified.
In 1999, President Clinton’s National Bioethics Advisory Commission (NBAC) issued a re-
port saying that federal oversight of tissue research was “inadequate” and “ambiguous.” It re-
commended specific changes that would ensure patients’ rights to control how their tissues
were used. It skirted the issue of who should profit from the human body, saying simply that
the issue “raises a number of concerns,” and should be investigated further. But little