In a fascinating turn of events, Ben Crump, the prominent civil rights attorney who represented the family of Treyvon Martin and Breonna Taylor, is representing the family of Henrietta Lacks, a deceased African-American woman. Ms. Lacks’ cells were used without her consent to develop a cell line at Johns Hopkins Hospital (extracted from her in 1951). There is a book and movie concerning her story. According to Johns Hopkins Medicine’s website honoring Ms. Lacks:
Today, these incredible cells— nicknamed "HeLa"
cells, from the first two letters of her first and last names — are used to
study the effects of toxins, drugs, hormones and viruses on the growth of
cancer cells without experimenting on humans. They have been used to test the
effects of radiation and poisons, to study the human genome, to learn more
about how viruses work, and played a crucial role in the development of the
polio vaccine.
. . . Over the past several decades, this cell line has contributed to many medical breakthroughs, from research on the effects of zero gravity in outer space and the development of the polio vaccine, to the study of leukemia, the AIDS virus and cancer worldwide.
The website also states:
In 2013, Johns Hopkins worked with members of the family and
the National Institutes of Health (NIH) to help broker an agreement that
requires scientists to receive permission to use Henrietta Lacks’ genetic
blueprint, or to use HeLa cells in NIH funded research.
The committee tasked with deciding who can use HeLa cells now
includes two members of the Lacks family. The medical research community has
also made significant strides in improving research practices, in part thanks
to the lessons learned from Henrietta Lacks’ story.
Moreover, the legal area and practices have developed since
1951, including the development of informed consent laws. The website also notes that John Hopkins was
one of the few hospitals that accepted poor African Americans as patients in 1951.
The likely defendants will include pharmaceutical and biotechnology companies
as well as John Hopkins. This case—assuming
it survives many legal challenges and is not settled relatively early (those are big “ifs”)—could
result in some very interesting law on the merits that may be challenging to
the biotechnology and pharmaceutical industries.
In 1990, the California Supreme Court basically decided in Moore v. Regents of the University of California that a patient did not retain a
property interest in tissue extracted from him.
Notably, his cells were also used to develop a cell line. The majority’s decision was influenced by
prudential concerns, including expressed fear about impeding the development of
the promising biotechnology industry. Importantly,
the case was decided when the biotechnology industry was arguably quite young
and the reasoning in that case was based on some factors that may not hold true
today—due to changes in the law, the development of technology, and changing
expectations and practices. Other courts
in the United States, in deciding similar issues, have basically stated that equity (unjust enrichment) may provide hope for some compensation to the party whose cells have
been utilized by researchers. A rejection
of Moore would have interesting implications for the field and the
preservation and protection of human dignity.
The timing of the filing of the lawsuits is interesting
because my guess is that public opinion of the pharmaceutical/biotechnology industry
is relatively high in the United States given the development of the vaccines for COVID-19. However, the continuing disaster of the
failure to get enough vaccines to the Global South and other parts of the world will result in additional human death and suffering, including the proliferation of variants which may evade
vaccines. This could turn the tide of
public opinion in the United States—along with high pharmaceutical prices—and result in additional pressure
to settle.
