HeLa

I wasn't sure how much I would get from The Immortal Life of Henrietta Lacks, since I had already heard a fairly comprehensive retelling of the story on the RadioLab podcast.  I actually really enjoyed the book, as its depth really added to my understanding of the family's situation and the historical details.  I do recommend listening to the podcast as well as reading the book.  The interviews with Henrietta's daughter Deborah gave her character even more life, even though I thought Skloot's characterization of Deborah was very well fleshed-out.

I thought the format of the book was one of its best features.  The way Skloot unveiled the story by switching from decade to decade, while intermingling medical information with human interest, kept me so engaged that I read almost all of the book in one day.  I also thought that following the reporter through the research process to some extent was smart writing.  I felt Skloot's excitement or surprise or dismay every time she encountered some new information or the family acted unexpectedly.

I wrote in an earlier post that I thought the Lacks children would have reacted differently to the news about their mother's cells had they been better informed and educated by the scientists who broke the news.  I still think this is the case, as evidenced by Deborah's gradually increasing comfort with her mother's cells being used for science over the course of the book.  It was heartbreaking to read about Deborah's anxieties over scientific activities involving Henrietta's cells that Deborah perceived as being physically painful to her mother.  Deborah also should not have been made to worry about having cancer herself when her blood was drawn for genetic testing.  There was a glaring lack of communication about what was being done with the cells from the very beginning, which I think signifies a lack of respect.  This seems to pretty well align with appalling medical research practices that exploited African American populations until at least the 1960s, such as the Tuskegee syphilis studies.

But Skloot ends her book by telling us that regardless of race, class, or any other variable, you are not guaranteed informed consent concerning the use of your tissues.  It was shocking to learn that getting informed consent from tissue donors is not law.  If consent does happen, it's out of the goodness of the researcher's heart.  Financial matters related to tissue use complicate the issue even more.  I do not believe that it was ever George Gey's to make financial gains from HeLa, as his generosity with the early HeLa cells indicates.  This good-natured sharing of resources is what I've always (perhaps naively) thought science was about.  I don't know what I think should be done to compensate people whose tissues bring profits to researchers or medical supply companies.  I do know that it seemed incredibly unjust that Henrietta's cells were making people rich while her family struggled to survive.  Even more frustrating is the idea that researchers could be using Henrietta's cells for years and on such a broad scale without anyone in her family being aware.

No wonder scientists prefer to mentally separate the people from the cells and tissues they research.  Things get far too gray when ethics and obligation come into play.

In thinking about the book and libraries, I was reminded of our conversation about health information in last week's class.  Several times in Skloot's interviews with Lacks family members, an individual would stress that they would not question a doctor's authority, especially when the doctor was white and the patient was black.  It occurs to me that the library and internet, though their medical information may be questionable at times, have wrenched the monopoly on medical knowledge away from doctors and have put it in the hands of the patients.  Although I'm still not entirely sure how I feel about answering medical questions in the library setting, I do feel that simply maintaining a well-rounded health collection could be a way to provide control over health care to patrons and therefore enact social justice.

privacy: bodies and books

illustration from The Incredible Book-Eating Boy by Oliver Jeffers

image from babygotbooks.com

Up to this point I had been thinking about privacy issues in terms of digital privacy only, but Byrne's article reminds me that I  have been putting my personal information out there long before the days of Facebook and blogs.  I am not comfortable with the idea of my social security number floating around outside of my control, as my campus identification number freshman year, for example.  In the digital realm, the fact that advertisements pop up relating to the content of my emails is a somewhat disturbing one.  But despite my uneasiness, I did not find it necessary for Byrne to resort to giving a worst-case example: freedom of information leading to an awful murder.  I see this as a kind of fear-mongering that chisels away at the rationality of his argument.  I think many people, especially young people, are consenting to small and seemingly harmless losses of privacy, as with Facebook, that could have major effects down the road.

Streiffer's article brings up thoughts about informed consent (or lack thereof) in the case of Henrietta Lacks.  I have not yet read Skloot's account, but during the RadioLab podcast's story on HeLa, I the family members' grief and frustration over the use of Henrietta's cells was hard to hear.  I felt that if the family had been given an adequate scientific explanation in lay terms, the daughter and others would have had options other than falling back on superstition and fear to understand the cells' usage.  For example, when Henrietta's daughter found out about her mother's cells, it seemed to her that an essence of her mother had returned, almost in a haunting manner.  That being said, I was shocked that a woman's cells could be used so extensively and for so many years without the knowledge of her family.

This relates to the issues in Strieffer's article in that family members may be spared a great deal of grief and confusion if the intended use of their loved one's cells is made clear up front.  It seems the actual consent forms should play a role in making this clear, if not for legal reasons, then for ethical ones--a "respect for persons" as Charo put it (1519).  I think that some individuals may hesitate to donate a family member's or embryo's stem cells because they are not sure how the cells are to be used.  While being transparent about stem cells' usage may turn some donors away, it may also alleviate some of the tension or apprehension surrounding the entire issue.

What doe all this have to do with libraries?  Protecting privacy should be one of a librarian's central professional values.  There are few institutions that give so much to patrons as libraries while asking so little personal information in return.  The struggle continues for balance between adequate service and the right to privacy.  When I worked in my undergraduate college's library in 2003-2005, the library administration had decided to adjust the circulation software so that no record remained once an item was returned.  This victory for personal freedoms was a huge point of pride for the library staff.  Unfortunately, it also meant that if we didn't check inside the DVD case before checking the item back in, we would likely never see that disc again.

Just like stem cell research and internet privacy, personal privacy in the library is not without its complications--and more serious ones than missing DVDs.  Although I believe in supporting the privacy rights of children in public libraries, I still have not sorted out how privacy or "neutrality" works in the elementary school library where the teacher and librarian are unavoidably influencing student book selection, persuading students to find books appropriate to their abilities and interests, and enforcing our opinions regularly.  There are even more complex privacy issues in the public library, relating to library/computer use and convicted criminals.  How much can or should a librarian do to protect the rights of such an individual whose rights have been revoked by the government?  If there are still controversies swirling around the use of something as tangible as human cells or as seemingly clear-cut as ownership of one's own body, I very much doubt that we will soon sort out all the issues concerning intellectual property and privacy.