17 February 2011
Post 327: The Immortal Life of Henrietta Lacks
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!