REBECCA SKLOOT
I have finally decided to pick this book up after five years since having bought it. I am writing a review for this book as I read it, with periodical updates every few pages. Recently, I have been giving in to writing the review anytime from immediately after, to a month or two (or three) later.
The book has started off as an introduction into how the author initially came upon this topic of the HeLa cell line in her college, and then subsequently tried to learn more about the original creator (or owner?) of the great-great-great…great grandmother cells of the current HeLa cells present in probably every cell lab in the world.
I am currently 100 pages in and have not found the book to be very interesting. It feels a bit like these chapters have been added to boost the page count, or to provide a bit of meaning to all the drudgery that was involved in the research process of writing this book. The first chapters discuss the life of HL growing up, and how the tobacco farms were tilled and harvested by the Lacks family. And then about her early life and the cancer itself that was serendipitously put in a cell culture that has given us the immortal cell line and all the associated benefits. The method and the results, as pointed out by the author, have repeatedly come under scrutiny with the morality of the future.
Currently at 250 pages in, and the previous point stands. The chapters about the author’s interaction with the family and how tough it was to gain their trust might seem interesting to some, but not to me. Again, it feels like the entire reason those portions were added was to create drama where there was very little. The portions that explain what goes on in the scientific world on the other hand are still interesting and memorable. By this stage though it might have been better to name the book the very mortal life of Deborah Lacks. I can’t say I am too interested in the life of the children of Henrietta.
With the book completed, my position as it stands today is clear that the progress in science should not be held back by consent forms and personal beliefs of the patients/subjects. In the specific case of Henrietta Lacks, it is deplorable that her children must struggle for health insurance and the general unaffordability of medication for their respective illnesses. An honorary position on some foundation dedicated to Henrietta Lacks with a token stipend and medical cover would be fair compensation. But beyond that, the expectation of a royalty for the mere fact that they are descendants of the patient is not a fair argument for perpetual royalties.
There might be an argument to be made that similar to how artist royalties and scientific patents continue to generate revenue long after the passing of the primary artist or inventor, the cell donors also have a right to receive a portion of the profits. When the offspring of a landlord continues to receive rent, why not the offspring of the donor of the HeLa cell line?
In my opinion, a just society must reward the engines behind growth. Contribution is mandatory for credit – be it monetary or acknowledgement. In scenarios such as the Henrietta Lacks immortal cell line, the primary actors were the lab that cultured the cells, the hospitals that supported them, the patient herself to a certain degree. If there were a continued collaboration between the patient and the scientists, that would mean that there is significant contribution without which the science could not continue, and thus would entitle the patient to credit as a contributor to growth. But otherwise, I do not believe there should be continuous monetary compensation for a one time donation, especially when it might have been made to benefit the patient.
Sai Tejas 