As you may
have noticed I have been reading a lot of books lately, but this one by far has
to be my favourite. It was one of my Professors that recommended it to me, so
interested I bought it.
Anyone who
has studied biology has heard of HeLa cells. They are the most important cell
line we have, they have been the subject of countless experiments and have been
invaluable to modern biology and medicine. This is the story of the woman from
whom these cells came, the only woman that can be said to have reached anything
close to immortality. I was expecting the book to be interesting if a little
dry and perhaps tedious in some parts. From the first page, however, I realized
that I was sorely mistaken.
This book
really tells four stories, all expertly wrapped up into one novel. The first is
who was Henrietta Lacks? What was she like, what did she like to do? The second
story is a history of medical research and HeLa cells, what they did for
biology and what medical research was like before the 1950s. The third is the
journalist’s own story, how she found Henrietta’s family and her struggle to
reach out to them. The fourth is one about bioethics, and it poses a very
interesting question: is it ethical to take someone’s cells, and sometimes
profit from them, without their knowledge or consent? Do we own the tissue that
is surgically removed from us, even if it is usually discarded? Do we have a
right to say what happens to those cells or tissues once we voluntarily have
them removed from our bodies?
Starting
from the beginning, as soon as I read the introductory remarks I knew it was
the book for me.
This is a work of nonfiction. No names have
been changed, no characters invented, no events fabricated. (…) Anything
written in the first person in Deborah Lacks’s voice is a quote of her
speaking, edited for length and occasionally for clarity. (…) Whenever possible
I conducted multiple interviews with multiple sources to ensure accuracy.”
This is my
kind of book, and the kind I hope to write myself some day. No embellishment,
no omissions, just straight fact. I liked it already, and the rest did not
disappoint.
Other than
being a fantastic read, there were a few parts of the book that really opened
my eyes, for better or for worse. As a scientist I used to get very annoyed
with people like my mother who viewed everything and anything that comes out of
a lab with a veil of mistrust, with a subconscious feeling that scientists are
amoral robotic entities that never consider the ethical ramifications of their
actions. I used to think that this was largely due to the horrific way that
scientists have been portrayed both by the media, in movies and by the screams
and shouts of people that do not understand the science they are publicly
blasting, like creationists or anti-vaxers. After reading this book, however, I
realized how stupid I was to think that. I have had the good fortune of coming
into an international scientific community where bioethics is an extremely
important part in everything we do. There are committees that make sure that
every experiment you conduct is by the book. If you are using animals in your
research, you have to demonstrate that you are using the minimum possible
number of animals to get a statistically significant result, that you are
housing the animals in the most optimal way possible and that you are never
causing the animals unnecessary harm or suffering. If you are conducting
clinical trials you have to demonstrate that you have the patients’ full
understanding and consent, that they know they can drop out of the study at any
time, that you do not admit patients that are at high risk of dying during the
study if they are placed in the control group, that all patients including the
ones that received the placebo get treated at the end of the study if the drug
has proved effective, that the drug does not present high risk of extreme side
effects (as demonstrated by animal tests and previous clinical trials) and that
any side effect you suspect the drug might have is communicated to the
patients. This is the state of biomedical research as of now, but in my
grandmother and mother’s day none of this existed, and the scientific community
is still feeling the ramifications of the terrible reputation it earned itself
in those days. Whether it be experimenting on poor African Americans causing
them to die horribly despite having the means to sure them or injecting
patients with cancer cells without their consent, I was horrified at what was
deemed acceptable to these researchers that I can only describe as sociopaths. I
do not know a single person that would ever defend the experiments that were so
casually and callously performed only 60 years ago, and that made me ask
myself: Is it that even then they were very rare but they became famous due to
their horrific deeds, or is it that the new bioethical systems in place make
the scientific community less attractive to a god-complexed fame-hungry
sociopath, who thus chooses a different career path?
The aspect
of this that really made me think is the issue of the ethical implications of
tissue research. The people that argue against “rights” for tissue donors made
two important points: 1. That the person from whom the cells or tissues are
taken are not actually doing anything, it is the scientists that put in all the
hard work to culture them, modify them, experiment on them and find all the
optimal ways to do these things. These cells could thus be considered their “intellectual
property”, they are the ones that invested the money to work on them and thus
they are the ones who should benefit from any reward. 2. Informed consent is
one thing, but when you start saying “I want my cells to be used in this
research but not in that other research but not if the research might be used
for that purpose” it can mean a halt in research, because it all becomes
exceedingly complicated.
I get both
points, but it is definitely not as simple as that. Admittedly HeLa cells are a
special case. They are sold all over the world, and you’d be hard pressed to
find a cellular biology lab that does not have vials of HeLa cells in their
freezers. There is a lot of money made on selling them, and yet Henrietta Lacks’s
family lives in extreme poverty. Her daughter, Deborah Lacks, sums up my
feelings on this:
Truth be told, I can’t get mad at science,
because it help people live, and I’d be a mess without it. I’m a walking
drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like
some health insurance so I don’t got to pay all that money for drugs my mother’s
cells probably helped make.
I can’t
ignore how the injustice this situation makes me feel, that while without the minds
that made HeLa cells possible should undoubtedly get the credit for what they
accomplished, Henrietta’s family should not be unable to pay for their own
medical expenses.
The second
point that is brought up is one that I understand, although I do not think it
needs to be that complicated. I think that over bureaucratising cell research
could cripple biomedical research, it does not have to be an all-or-nothing
debate.
I
definitely believe in informed consent, and I don’t think that it needs to be
complicated. Personally, I think that the bioethical problem can be summed up
with two forms, two consent measures. 1. Consent to use your cells or tissues
in research, whatever the research might be, without going into the details of
what research is acceptable and what research is not. The patient should know
what those research possibilities are and decide whether or not they accept
them. 2. Consent to profit from said cells, which is only something that crops
up in a handful of cases. At this stage, you can stipulate a base percentage
that goes to the patient – not one that is negotiable, but one that is
stipulated by law, say 15%. The patient gives consent that his or her cells can
be used for financial gain with 15% of that gain going to them, yes or no.
Read the
book then tell me what you think. Is it too simplistic, still too complicated,
or at least far better than the total lack of legislation we have in this
regard at the moment?