Who Authored You?
In my family women are archivists. At the end of the school year I throw a pile of paper into the recycling bin and five minutes later I hear my mother going through it. My grandmother visited us so as not to not to 'miss' moments. She visits it seems to take photographs the event is listed on her itinerary when she sends it. I have received all of the following images at least three times and usually in multiple mediums—from a CD and an email for example. There’s a determination for my Grandmother—who also will sit down and force her cousins to write out what they can remember about relatives and family trees—to make the dead take root in us. It’s not as odd as might be then that the most prevalent memory I have is of her taking out a great mass of red curls from a manila envelope to show me.
The red curls were my Great Grandfather's, cut before his confirmation. For over 70 years his hair has rested in a series of envelopes. My sisters and I are terrified of the day my grandmother dies and decides whom to pass the hair onto. Will we keep it? Should we? Shouldn't we? Don't we have to? After all, for her he lives on in his hair—still the bright red, still curled. The attribution of identity to fragments puzzled me then and continues to. Continues to because mother has always been of the opinion, and she's not afraid to tell me this, that my body is not my body. It's hers. She gave it to me. She grew it, inside her.
I remember sitting in the car with her on the way to the grocery store. We were discussing the blood drive at school and she refused to sign the form for me. "You can't give away your blood. It's mine and I gave it to you."
And this concept of collective identity and ownership claims the entire body. My mother's reactions to three years of short haircuts has varied from supportive to distraught but my grandmother's has always been the same: she tells me what lovely hair I have and that if I keep some of it and put it in a river the next time, it'll grow out faster.
It's obvious to me sometimes that when we speak of my hair we're actually speaking of her hair or our hair. Because her hair is what gave me my hair (the color, the thickness) so that her hair in grade school is mine in college. And her haircut in college, the one she got in nursing school because her friends told her to, is mine and hangs over my sister in Chicago like threat. So that when my sister when to Chicago for college along with my Grandmother's concerns about public transportation, drinking water, and whether mail would get there alright hung the admonition: don't let them cut your beautiful hair!
My perspective is one of a memoirist. I can easily take them moments and construct a narrative that reveals my family and our neurosis. I can discuss the Catholic weight placed upon our bodies. Suicide is a violation in a way against the rights of God, and practices like smoking were discouraged by the Jesuits who taught me my catechism because they violated the concept of Stewardship. The attitudes then seem connected. God gave you your body--are you really going to wear that nail polish? Would Jesus approve of a tattoo?
There are a few key moments in my life that I feel I can use to explain, summarize, narrate the rest of it. Those moments of blood and hair have always belonged on the list. It wasn't until I read Rebecca Skloot's book on Henrietta Lacks that I began to consider that my mother's own personal views on my blood and her blood might not be so personal and individual as I thought they were. Taking the private individual world of memoir and fiction and applying or finding the same motif and beliefs in investigative journalism and newspaper articles isn’t something I anticipated but I found the connection between Rebecca Skloots The Immortal Life of Henrietta Lacks, The Havasupai Trial and my own memoirs surprising and difficult to ignore.
Afterall didn’t Skloot reveal a collective identity that Henrietta’s family held over her cells? There was a concept of inheritance that went beyond the potential for profits. At the bottom of Skloot's book--and the Havasupai case-- are issues like social reform and racism but rolled into all of that is some complication over the differences between ownership and inheritance. The scientific ethics behind the case, the cultural beliefs of the Lacks family and the Havasupai tribe further complicate this.
I am not sure that Skloot fully explores or even realizes the strange financial and emotional attachment the Lacks family feels towards the tissue samples, the cells. An attachment that I think is rooted firmly within humanity (or at least the Martin family) that reveals more about our desires than our genetics. How much of our attachment to biology, science, religion, the hard facts of existence, is just a continuation of our desire to lessen the dark spaces between us and those we love, who have died, or gone to school in Chicago? Sagan, for example says that "Pseudoscience speaks to powerful emotional needs that science often leaves unfulfilled."(14) I don’t really agree with his term ‘pseudoscience’ because it’s innately pejorative. Any school of belief, scientific or mystical faces these emotions and often there isn't anything pseudo to them at all.
In the case of Havasupai Indians Dr. Markow conducted research with blood samples given by members of the tribe to study diabetes, schizophrenia and the effects of inbreeding. These samples (about 400 of them) were collected in the 1990s. Over ten years later the genetic studies conducted by doctoral student Daniel Garrigan when John Martin, an anthropology professor at ASU contacted a member of the tribe. The injury falls in at least two areas, the Havasupai are a minority group and their DNA has been used without their permission (in the 1990s and then again by Daniel Garrigan) and the Garigan’s findings, that the tribe migrated from Asia do not agree with the religious and cultural beliefs of the Havasupai.
Like in the Lacks case the participants did sign a consent form “stating that their blood could be used to “study the causes of behavioral/medical disorders,” but many said they had believed they were donating it only for the study of diabetes, which tribal members suffer from at extraordinarily high rates.” (Harmon)
At the time of donation Markow did use the blood to look into other areas a research which I believe while not illegal on paper ran counter to how the participants were informed. The lawsuit also alleges that the ASU researchers erroneously destroyed some of the tribal blood, and allowed "wholesale transfer of blood samples from laboratory to laboratory and university to university for over a decade to the extent that many blood samples cannot be accounted for at this time." (Rubin) What is striking—to me—is the treatment of the blood samples as bodies. Especially when the question seems to be, not do you own your body but do you own your DNA? How to even answer that. From a legal, copyright trademark sense I’m not sure you did because you didn't author it. Your cells authored you (didn’t they?) And if they aren’t authoring you (even though they have the potential to because they contain your DNA) what is your connection to them? Who owns your organs, your cells and tissues? you do--until you give them away.
The Havasupai do have a deep religious and cultural claim to their cells. But when, in the case of lacks, the cell the researcher is looking at was not originally found in the body of the donor, but was cultured from the cell instead, or even more removed from that process by years and years of different cultures DNA is identical perhaps to the DNA in the body of the donor but the cell never had a place in there.
Consider after all, my mother. Who owns my blood, my mother or me? She seems to think she still has some ownership over my cells and DNA even though I have exited her body and regenerated growth since then. It is possible I will generate and go through an entire cycle of red blood cells without her being present. And if I donated my blood to the Red Cross they would own it.
From a religious or cultural perspective, one that is specifically unique to the Havasupai tribe --perhaps they are a good response to Sagan’s question to the Dali Llama (278)-- blood cells alter. The Havasupai have a concept of ownership and authorship there that made me stop and think for a second when I read a quote “The Havasupai, however, were focused on giving a proper burial to relatives who have died since their blood was collected and studied.”(Mara)
Wait, I thought, does that mean that they haven't buried their family members because of the legal procedures? And I immediately thought of medical freezers full of these poor old dead Havasupai. Horrifying. But it didn’t make sense. Upon further research I learned it was really just their blood that would be buried. Because to the Havasupai the blood is the person. So if I ever need to ask myself: what do my mother--what possibly could my mother--and a tribe of native Americans she has never met, never went to school or church with have in common except maybe liking the same football team or tv show or chip flavor or something? The answer is: A deep appreciate and demanding respect and authority over the cells and tissues connected to their DNA. And since I have never valued my mother’s belief that I shouldn’t give blood I it made me consider the presentation of the presentation of the Havasupai's religious beliefs.
Considering that no one flew to their settlement and explained to them that they didn’t come from where they came from. I was wondering why they didn’t just assume that the science was incorrect and inapplicable. Why not just believe that life is more mysterious than science can encompass? For centuries Catholics have believed in The Shroud of Turin. Skeptics have always had clever explanations. Sometimes we place a higher value on faith.
The family of Henrietta Lacks doesn’t know that her cells have to be tinted with a dye to show up under the microscope. Her family has the same kind of devotion and spiritual respect for her body and her cells that my grandparents have for The Shroud. In both cases they’re facing, perhaps, a lack of knowledge but they’re also revealing a great power of wonder, and the ability to believe and have faith that I don’t think Sagan accounts for. And that Skloot, while she conveys it, neither corrects scientifically nor adequately defends spiritually. While she does a good job of revealing the social issues, the economic problems (their health insurance is heartbreaking) she doesn’t defend their mysticism.
And why not? Because as much as Sagan is frightened of the pseudo-science, a great deal of force has been placed upon culture to revise mysticism to facts. If Henrietta’s family saw her ghost would Oprah make a movie out of it?
In light of this maybe the Havasupai need to have the faith to accept scientific inquiry and their own religious perceptions along a parallel continuum. Most religions require the faith to wait till the end of the movie, the show, the book or the story, to find out the answers—to rest easy or uneasy with the knowledge that we probably won’t.
I’m not Catholic I haven’t received the sacrament in years but when my best friend rolls around on her bed cheerfully talking about how the shroud of Turin in a medieval fake don’t you know that? Isn’t it so silly? I’m as unsettled. Science has failed to do anything conclusive in areas like this. And I’ll listen to the theories, which is what they are, and I’ll even believe in things like causality and thermodynamics—but my personal ethics are a different matter. And I don’t just mean religion –because at the end of the day I might believe in the age of the shroud but not its miraculous powers. I mean a world view that can encompass differing opinions and answers and not explode.
Keats spoke of negative capability—the ability to sustain in one’s mind the impossibiltity of an answer for certain questions. I’m more interested in something that might be close to a “dual” negative capability—the ability to sustain two possible answers to a question without suing someone.
Gay, Mara. "Arizona State Settles DNA Dispute With Havasupai Indians." Top News & Analysis, US, World, Sports, Celebrity & Weird News. AOL News, 22 Apr. 2010. Web. 03 Dec. 2010. <http://www.aolnews.com/nation/article/arizona-state-settles-dna-dispute-with-tribe/19450005>.
Harmon, Amy. "Where’d You Go With My DNA?" The New York Times. The New York Times Company, 24 Apr. 2010. Web. 3 Dec. 2010.
"The Havasupai Case." Who Owns Your Body. Who Owns Your Body, 2010. Web. 03 Dec. 2010. <http://www.whoownsyourbody.org/havasupai.html>.
King, James. "Havasupai Tribe Win Nice Settlement From ASU In Scandalous Blood-Sample Case - Phoenix News - Valley Fever." The Phoenix New Times' Blogs. The Phoenix New Times, 22 Apr. 2010. Web. 03 Dec. 2010. <http://blogs.phoenixnewtimes.com/valleyfever/2010/04/havasupai_tribe_finally_win_ni.php>.
Rubin, Paul. "Indian Givers." Phoenix News Times News. Phoenix News, 27 May 2004. Web. 03 Dec. 2010. <http://www.phoenixnewtimes.com/2004-05-27/news/indian-givers/2/>.
Sagan, Carl. The Demon-Haunted World: Science as a Candle in the Dark. New York: Random House, 1996. Print.
Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Crown, 2010. Print.