Post 327: The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks by Rebecca Skloot. ISBN: 9780307589385 (eBook).

There have been questions about Skloot's methods for obtaining information from the Lacks family. Some of her methods appear to be borderline pestering and manipulating/exploiting the family further. I'm going to look at it from the side of the researcher, since that's what I'm somewhat familiar with.

There aren't a whole lot of people who are just going to give you personal information, especially when they know you'll be publishing it. You have to be pretty damned smooth and charismatic in order to get people to drop their guard enough to tell you their life story, or even someone else's life story sometimes. Because of this sometimes it is necessary to develop a relationship, especially if the person or people you're working with have been hurt as the Lacks family obviously has. Regardless of whether Skloot's actions were actually moral, it does seem that her actions ended up benefiting the Lacks family overall by giving them a forum in which to air their grievances.

Whether or not Skloot badgered them, they were badgered by other media sources. The fact that Skloot was willing to give the Lacks family time to open up and learn to trust her demonstrated that her heart was at least in the right place and that she did have the family's best interests in mind. I do not know whether the remaining Lackses would say their interests and trust have been kept, but I do know they are receiving more benefits from their talks with Skloot than they ever received from the medical profession.

It is not often that history and/or journalism can help in such a way. Sometimes the only benefit that occurs when the interviews are over, the research is done, and the paper written is that the subject regains some level of personhood. In that sense, I believe Skloot achieved that goal. Henrietta Lacks and her family are very real people in this book. If Skloot steamrolled and cajoled the family, at least this time it was done with less harm than those who swear "First, do no harm." While medical science has certainly profited from HeLa, as have so many others, is it worth the harm that has been done to the Lacks family? Especially since Henrietta Lacks may have agreed to everything if someone had asked permission and explained what they were doing and why. What is the harm in asking?

An excellent review can be found from another bloggin' librarian over at ricklibrarian.
LibsNote: Copy downloaded from my public library. Ask your local library if they carry eBooks!

Post 326: The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks by Rebecca Skloot. ISBN: 9780307589385 (eBook).

I think the idea of someone doing anything to your body (regardless of whether it is still attached to you) without your permission is a bit disturbing. I know this is a bit at odds with my views about what happens to my body after I'm dead as far as organ donation and then disposal of my remains, but organs typically don't last forever and disposal means it is trash and theoretically no one should want it. Taking tissue samples from my body and using them in ways that I, or the donor, have no knowledge of is and should be highly objectionable to everyone involved.

Curing cancer? This I have no problem with. Finding a cure for cancer and charging people thousands of dollars for it when you know only a small percentage of the population can afford it (especially if it costs pennies to produce)? I am not as okay with. Using my tissue samples to develop biological weapons? I am morally opposed to.

The chances of this actually happening to my cells are probably pretty slim. But the medical world probably does have my samples on file somewhere. I donate blood, I am a woman and have therefore forcibly donated cervix cells in order to obtain access to birth control, and I've had a biopsy on my thyroid. I have never received confirmation that those samples were destroyed or no longer exist, and now that they are outside of my body they are no longer "mine."

It is not so much that I want to profit from discoveries made from my cells. I believe that everyone has an obligation to progress areas of science that will make critical improvements in the quality of life. I do believe in making those benefits available to as wide a number of people as possible. There is no humane/Christian/compassionate argument for allowing another person to live in suffering in order to make a profit. I am not arguing for free medicine; doctors, health insurance companies, pharmaceuticals, and test subjects and specimen providers should be fairly compensated for their contributions to medical science.

But how "fair" it is for CEOs of pharmaceutical companies to make their high-end salaries when they are not so much in charge of curing cancer as they are in running the company that produces the cure for cancer and then figuring out how much money they can make off of it? There is something deeply, deeply wrong with viewing the healing of the sick in this manner, just as surely as it is wrong to take something from someone's body and then state that they have no claim over what happens to it. This would be a lot like an author publishing her book and then immediately losing all rights to it. While she has to suffer the slings and arrows of praise and criticism alike, at least she doesn't have to do so without a paycheck attached to her efforts. In the case of Henrietta Lacks, it was if they chopped up her novel and spit it out in a million variants. Not only was she never fairly compensated for each variant, she wasn't even asked if that variant could exist in the first place.

Let's make this personal: how would you feel if your cells were used to cure cancer? No objections there, probably. But what if they were used to make human clones? What if they were used to make designer babies? What if they were used to create a biological weapon to wipe out people of a certain ethnic background?

I have news: you don't have that right. And if you have ever given any tissue samples, someone probably has your cells and has every legal right to do those things (although hopefully most of those would not reach the human testing stage).

An excellent review can be found from another bloggin' librarian over at ricklibrarian.
LibsNote: Copy downloaded from my public library. Ask your local library if they carry eBooks!
Oh, if you prefer fiction, but still want to read about some of the issues raised by Skloot, Michael Crichton's novel Next is actually really fascinating, pseudoscience aside.