The Immortal Life of Henrietta Lacks

which refused to hear their case. When this book went to press, they were contemplating
class action. Most recently, in July 2009, parents in Minnesota and Texas sued to stop the na-
tionwide practice of storing and conducting research—without consent—on fetal blood
samples, many of which can be traced back to the infants they came from. They argue that
research on those samples is an invasion of their children’s privacy.
Because of the Health Insurance Portability and Accountability Act (HIPAA) of 1996, there
is now clear federal law in place to prevent the kind of privacy violation that happened to the
Lacks family when doctors at Hopkins released Henrietta’s name and her medical records.
Since tissues connected to their donors’ names are subject to strict regulation under the Com-
mon Rule, samples are no longer named using donor initials as Henrietta’s cells were; today
they’re usually identified by code numbers. But, as Judith Greenburg of the NIH says, “It’s
never possible to one-hundred-percent guarantee anonymity, because in theory we can now
sequence genes and find out who anyone is from their cells. So the consent process has to
be more about laying out the risks of tissue research so people can decide whether they want
to participate.”
Ellen Wright Clayton, a physician and lawyer who is director of the Center for Biomedical
Ethics and Society at Vanderbilt University, says there needs to be a “very public conversa-
tion” about all of this. She says, “If someone presented a bill in Congress that said, ‘As of
today, when you go to the doctor for health care, your medical records and tissue samples
can be used for research and nobody has to ask you’—if the issue were stated that bluntly so
people could really understand what’s happening and say they’re okay with it, that would
make me more comfortable with what we’re currently doing. Because what’s happening now
is not what people think is going on.”
Lori Andrews, director of the Institute for Science, Law and Technology at the Illinois Insti-
tute of Technology, wants something more drastic: she has called for people to get policy-
makers’ attention by becoming “conscientious objectors in the DNA draft” and refusing to give
tissue samples.
David Korn, vice provost for research at Harvard University, argues that giving patients
control over their tissues is shortsighted. “Sure,” he says, “consent feels nice. Letting people
decide what’s going to happen with their tissue seems like the right thing to do. But consent
diminishes the value of tissue.” To illustrate this, Korn points to the Spanish flu pandemic. In
the 1990s, scientists used stored tissue samples from a soldier who died in 1918 to re-create
the virus’s genome and study why it was so deadly, with hopes of uncovering information
about the current avian flu. In 1918, asking that soldier’s permission to take tissues for this
kind of future research would have been impossible, Korn says. “It was an inconceivable
question—no one even knew what DNA was!”