This is the second of my posts written during the COVID-19
quarantine, during which I tried to catch up on reading I've been neglecting.
For this week I'll be reviewing freelance science writer Rebecca Skloot's The
Immortal Life of Henrietta Lacks (2010), an engaging, thought-provoking,
and unflinching nonfiction tale at the intersection of medical ethics, race,
and biotechnology.
The year was 1951. Henrietta
Lacks, a 31-year-old Virginian mother and tobacco farmer, found a hard
"knot" on her womb that she could not explain (Skloot, 2010, p. 56).
It wasn't until her subsequent appointment that she was diagnosed with cervical
cancer. While Henrietta was anesthetized to receive a radium treatment, samples
of her tumor were taken without her knowledge or consent by Johns Hopkins cell
tissue researcher George Gey in his quest to culture a line of human cells that
would be useful in advancing biomedical research. Up until that point, most
cell lines did not last that long, because a sample's original cells only
divide a finite amount before dying, about when they have "doubled fifty
times," making research resource and time intensive (Skloot, 2010, p.
390). This limit on cell division is known as the "Hayflick Limit"
(Skloot, 2010, p. 390).
Unfortunately, Lacks would
succumb to the unusually aggressive cancer not long after her diagnosis and
gruesome radium treatments; but her cells, known as "HeLa" for the
first two letters of her first and last names, would (and still) live on in
labs around the world. This is due to the fact that her cells, infected by a
particularly virulent strain of Human Papillomavirus (HPV), were cancerous in
nature and not constrained by the Hayflick Limit like normal cells. It would be
those properties of hardiness and rapid reproduction that allowed researchers
to make numerous advances beneficial to humankind in the development of
treatments and vaccines for a wide variety of ailments and diseases without
risking human test subjects.
Not coincidentally, biomedical
and pharmaceutical companies would largely reap the benefits of HeLa's rise.
Initially unaware of the commercialization of the HeLa cells, the Lacks family
would find out twenty years after Henrietta's death of HeLa's fame and
accompanying profitability, with understandable feelings of betrayal and
exploitation. Skloot contextualizes this episode in a long history of gruesome
experiments conducted on African-Americans, such as the infamous Tuskegee
syphilis study, in order to get readers to understand the complex ethical
issues surrounding patient consent, tissue ownership rights, and scientific
advancement. The latter is especially important considering our tissues are
taken all the time. For example, when we attend doctor appointments or send in
our DNA to companies like Ancestry and 23andMe.
Of course, there are now laws
that seek to promote patient consent, privacy, and rights such as those
prohibiting genetic discrimination or the unauthorized release of patient
medical records. However, the reach of these laws is limited. For example, modern
laws surrounding consent largely apply to federally funded research. Should
these laws expand their reach to the situations not covered by federal research
law? Would this chill scientific advancement? These are but a few of the
questions raised. Skloot's book provides no definite answers, but leaves it up
to the reader to make an informed judgment on these important ethical
questions.
Overall, Skloot's employment of
the running parallels of the Lacks family story and HeLa's scientific journey
makes The Immortal Life of Henrietta Lacks an informative and
engaging must-read for everyone, scientist or not.
Works Cited:
Skloot, Rebecca. (2010). The Immortal Life of Henrietta Lacks. New York: Broadway Books.
