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.