The Immortal Life of Henrietta Lacks

disease gene discovered in her children’s tissues, which lets her determine what research is
done on it and how it’s licensed.
Gene patents are the point of greatest concern in the debate over ownership of human
biological materials, and how that ownership might interfere with science. As of 2005—the
most recent year figures were available—the U.S. government had issued patents relating to
the use of about 20 percent of known human genes, including genes for Alzheimer’s, asthma,
colon cancer, and, most famously, breast cancer. This means pharmaceutical companies, sci-
entists, and universities control what research can be done on those genes, and how much
resulting therapies and diagnostic tests will cost. And some enforce their patents aggress-
ively: Myriad Genetics, which holds the patents on the BRCA1 and BRCA2 genes responsible
for most cases of hereditary breast and ovarian cancer, charges $3,000 to test for the genes.
Myriad has been accused of creating a monopoly, since no one else can offer the test, and
researchers can’t develop cheaper tests or new therapies without getting permission from
Myriad and paying steep licensing fees. Scientists who’ve gone ahead with research involving
the breast-cancer genes without Myriad’s permission have found themselves on the receiving
end of cease-and-desist letters and threats of litigation.
In May 2009 the American Civil Liberties Union, several breast-cancer survivors, and pro-
fessional groups representing more than 150,000 scientists sued Myriad Genetics over its
breast-cancer gene patents. Among other things, scientists involved in the case claim that the
practice of gene patenting has inhibited their research, and they aim to stop it. The presence
of so many scientists in the suit, many of them from top institutions, challenges the standard
argument that ruling against biological patents would interfere with scientific progress.
Lori Andrews, who has worked pro bono on all of the most important biological ownership
cases to date, including the current breast cancer gene suit, says that many scientists have
interfered with science in precisely the way courts always worried tissue donors might do. “It’s
ironic,” she told me. “The Moore court’s concern was, if you give a person property rights in
their tissues, it would slow down research because people might withhold access for money.
But the Moore decision backfired—it just handed that commercial value to researchers.” Ac-
cording to Andrews and a dissenting California Supreme Court judge, the ruling didn’t prevent
commercialization; it just took patients out of the equation and emboldened scientists to com-
modify tissues in increasing numbers. Andrews and many others have argued that this makes
scientists less likely to share samples and results, which slows research; they also worry that
it interferes with health-care delivery.
There is some evidence to support their claim. One survey found that 53 percent of labor-
atories had stopped offering or developing at least one genetic test because of patent en-
forcement, and 67 percent felt patents interfered with medical research. Because of patent li-