The legacy of Henrietta Lacks popped up
again today in a piece in the New York Times that should
resonate among stem cell researchers and within the stem cell
industry.
It even has a current hook involving
California legislation to permit women to sell their eggs for the
purposes of scientific research – a bill that is now on the desk of
Gov. Jerry Brown.
The issues in the Lacks saga involve ownership of human
cells, trafficking in them and informed consent, all of which surface in one form or another in the state legislation.
But first a refresher on Henrietta
Lacks. She was an African-American woman who died in 1951 of cervical
cancer at the age of 31. Shortly before her death, physicians removed
some of her tumor cells, and, as recounted in
today's NYTimes article
by
Carl Zimmer,
“They later discovered that the cells
could thrive in a lab, a feat no human cells had achieved before.
"Soon the cells — nicknamed HeLa cells
— were being shipped from Baltimore around the world. In the 62
years since — twice as long as Ms. Lacks’s own brief life — her
cells have been the subject of more than 74,000 studies, many of
which have yielded profound insights into cell biology, vaccines, in
vitro fertilization and cancer.”
But Lacks never consented to her cells'
being studied, a situation not uncommon at the time, nor did her
family know about the situation until 1973. The complete story was
chronicled in 2010 in a best-selling book, “The Immortal Life of
Henrietta Lacks," by Rebecca Skloot.
Zimmer noted in today's article,
“For 62 years, (Lacks') family has
been left out of the decision-making about that research. Now, over
the past four months, the National
Institutes of Health has come to an agreement with the Lacks
family to grant them control over how Henrietta Lacks’s genome is
used.”
Development of products based on human
stem cells promises even greater rewards, with billion-dollar
blockbuster therapies not out of the range of possibilities. Profit
and the desire to record a stunning research triumph are powerful
motivators. They can lead to short cuts and dubious practices, such
as seen in the
Korean stem cell scandals of 2006.
So we come to whether women who donate
their eggs for stem cell research can give truly informed consent
when they surrender all rights to whatever products may result from
parts of their bodies, as is common on such consent agreements. Or
for that matter, what about the men who give up adult cells for
reprogramming to a pluripotent state? Can they really understand the
likelihood of a billion dollar product being generated with the help
of their contribution? On the other hand, can the donors also truly
understand that they are probably more likely to be struck by
lightning than have their body parts result in a medical blockbuster?
These considerations may seem
insignificant to some in science. But to grasp their full
implications, one only has to read a few of the nearly 200 reader
comments today on Zimmer's article today. Here is a sample.
From Frank Spencer-Molloy in
Connecticut:
“(T)the Lacks family was robbed.
Scores of companies profited to the tune of tens of millions of
dollars from products they made derived from Henrietta Lacks'
cancerous cells. Maybe this will provide some impetus to a wider
consideration of the rights patients are entitled to when their
tissues are cloned and disseminated to other researchers and
ultimately put to use in profit-making ventures.”
From Robbie in New York City:
“At the very least, this family needs
to be financially compensated for the anguish of their discovery and
for the time and energy they've put into pursuing their rights. In my
opinion, they also deserve a portion of any commercial gain that's
been made using the HeLa cells. It is only through having to give
away money that the powerful learn manners.”
From Julia Himmel in New York City:
“It is absolutely true that
scientists have had a blind spot when it came to the human element of
the HeLa cells.”
The
pay-for-eggs legislation (AB926)
now before Gov. Brown requires informed consent from those who
provide eggs. Opponents of the measure, however, argue that truly
informed consent from some women could be actually impossible because
of economic pressures felt by the women.
Writing in The Sacramento Bee last month,
Diane Tober and
Nancy Scheper-Hughes said,
“Allowing a market in eggs for
research would reach beyond the current pool to target women who may
be motivated by dire need. How many low-income women might consider
selling their eggs, multiple times, to feed their children or pay the
rent?”
Even the fertility industry group
sponsoring the legislation acknowledges that informed consent can be
problematic.
A 2012 news release from the
American Society for
Reproductive Medicine said,
“Prospective egg donors must
assimilate a great deal of information in the informed consent
process, yet it remains difficult to determine the extent of their
actual understanding of egg donation and its potential risks.”
The story of the treatment of Henrietta
Lacks and her descendants is a poor commentary on science and
medicine. Yet it resonates with the public, which is keenly sensitive
to scientific and medical abuses, even in situations that did not
appear to be abuses at the time.
Stem cell research already is burdened by its own
particular moral and religious baggage. With
commercialization of new, pluripotent stem cell therapies coming ever
closer, the last thing the field needs is contemporary version of the
Lacks affair. It would behoove researchers and the stem cell industry
to walk with more than normal care as they manipulate products that
are tied inextricably to visions of both motherhood and money.
