Rebecca Skloot, The Immortal Life of Henrietta Lacks
Jaron Lanier, You are not a Gadget
I wrote this in mid June and never posted it for a reason that I can no longer remember. Last week Jed Emerson called me and asked me if I'd read Jaron Lanier's book and/or blogged about it. I pulled this off of the hard drive to share with him and thought perhaps others might be interested.
The shifting domains of public and private
“What is public, what is private and who decides?” has been the guiding question behind my work for twenty years. It shaped my decision to go to graduate school, it shaped my dissertation, and it shapes my work today. I got involved with philanthropy because it allowed me to think about private resources and public systems. If I were leaving graduate school today I might very well opt to work for a social networking company, a medical research firm, or someplace I could talk about Wikileaks all day – the questions of public and private have become mainstream.
In trying to make sense of two very different books, The Immortal Life of Henrietta Lacks by Rebecca Skloot and You are Not a Gadget, by Jaron Lanier, I realized the question of public and private was at the heart of both books. Skloot’s book is about race, class, and medical research. Lanier looks at technology, music, web 2.0, social networks, and the demise of the middle class. But both are fundamentally about the changing relationships between public and private.
Henrietta Lacks was a working mom of five children in Baltimore in the early 1950s when she was first overtaken by severe abdominal pain. The pain led her to the hospital at Johns Hopkins University, which at the time provided most of the area’s care to the poor. It also served both blacks and whites. Lacks was diagnosed with cervical cancer and treated with radium. Before she died, and again afterward, the doctors providing the treatment took tissue samples of the tumors. From these tumors came the first human cells to ever grow outside of a body.
These cells (named #HeLa – for Henrietta Lacks) eventually contributed to most of the major medical breakthroughs of the next 60 years, including the polio vaccine, AIDS treatments, cancer drugs, and HPV vaccine. No one asked Henrietta or her family if they could use her tissue for these purposes. Over the next 50 years Henrietta’s descendants would both be ignored and hounded by medical researchers, reporters, and charlatans. They would be dismissed as profit-seekers, ignored by those with higher educations, refused medical treatment for lack of insurance, and lied to about medical tests performed on them. Henrietta’s cells have become immortal, and influenced medical research and patient practice. Henrietta’s family has been lied to, used, and, occasionally recognized, for the role these cells played. All of us, as patients, potential tissue donors, and users of over-the-counter and prescription medicine have benefited from the systems, companies, and practices that evolved from Henrietta’s immortal cells.
At the cellular level, we all look the same. As one cancer researcher explains to Henrietta’s daughter in answer to her question about why the cells aren’t black if her mother was, “Under the microscope, cells don’t have a color. They all look the same….You can’t tell what color a person is from their cells.” (Skloot, location 4316, Kindle edition)
Jaron Lanier’s You are Not a Gadget looks at how we're also starting to all look the same on the Internet. He deals with the dehumanizing nature of the Internet, emphasizing that we have done this to ourselves. As we all answer the same Facebook question, fill in the same data fields about ourselves, and willingly contribute our ideas for free to aggregators such as Twitter and Facebook, we collectively devalue ourselves. No wonder, says Lanier, that writers, photographers and musicians struggle now to make a living practicing their crafts – what was once primarily private creativity is now a project of the “hivemind.” Private creation becomes less and less possible as the public stage of social networks becomes ever more pervasive.
As I read Lanier’s argument I felt as if he were pointing right at me. I am a user and supporter of Creative Commons licensing, even as I occasionally feel bitter that someone is quoting me without attribution. Through this blog I have given away most of my relevant professional thinking for the last eight years, building a consulting practice that feeds and support it. I have done the math to make the business model work, but I have not seriously considered the degree to which my “non attributable” thinking has made it harder or easier for me to lay claim to my ideas.
Lanier’s most compelling point focuses on how technology manages us. Anyone who has ever trained a dog knows what he means. When you use treats to train a dog to be quiet your first thought is “Wow, look how smart this dog is.” Then you mistakenly think, “Look at what I can do.” And finally, the 5000th time you reach for a treat when he barks you realize what has been going on all along, and you realize, “Wow, look how smart he is. Look what he can make me do.”
Just as we think we are training the dog (and not vice versa), we tend to think we are in control of the technology we use. Lanier points out the degree to which the design decisions made by coders actually affect the ways we work. The obvious one is twitter with its 140-character limit on our wisdom or pithy insights. But the truth is that all technology, at both the interface and the functional level, influences how I express myself. And influence the way you listen and respond to me.
The cumulative impact of web 2.0 has been to accelerate the rate at which we blur ourselves with machines. Lanier decries the effects of thinking about the Internet as conscience creature. He bemoans and belittles the hivemind, swarm mentalities, and purely public, shared creativity. In so doing, he encourages us each to reclaim some of our private thinking and creative spaces, our own ideas, and our ability to control them.
In the decades since doctors took cells from Henrietta Lacks, the medical profession, individuals, and U.S. courts have struggled with the idea and implementation of informed consent. Despite case law, HIPPA, and patients’ bill of rights, there is no standard legal answer to the question of who owns our tissue once it is taken from our bodies. Some researchers argue that fully informed patients will bring medical research to its knees and create a marketplace of profiteering body part salespeople. Others see exactly the opposite truth, and point out the following irony: “It’s illegal to sell human organs and tissues for transplants or medical treatments, but it’s perfectly legal to give them away while charging fees for collecting and processing them.” (Skloot, location 5266, Kindle edition)
Skloot argues that the “tissue rights” movement may be the next big social movement. Could there be any more intimate a petri dish than this in which to consider questions about who decides what is private and what is public? And if the intimacy of cells and body tissue is too close, Lanier raises the same question on a global scale. In this age of social networks and sharing, are we giving away our individuality in creating these vast repositories of ideas, material, music, and thoughts?
One of the scientists in Skloot’s work says we all owe something to the public good, and should view the medical community’s use of our tissues with this in mind. Even as I readily give away my thoughts on this blog and benefit from medical research on human tissue I find this viewpoint troubling. Are my thoughts and ideas the same as my tissues? And what about Lanier’s concern, that we now so readily give our thoughts to the public sphere that private ideas are harder to create, find and value. True? Overblown?
Is the my confusion caused by the difference between material (cells, tissue) and ideas? It can't be that simple - as economic artifacts cells that reproduce outside of the body are quite similar to ideas. They both get more valuable as used. They can be reproduced without diminishing the original source. Does it have to do with consent and control in different types of markets? With issues of control and expertise? Or just fluid definitions of public and private? Maybe I am just intellectually inconsistent.
Skloot may be right that the tissue rights movement will be the next great social movement. If so, we will become even more familiar with these questions of public and private. Lanier argues that we are not gadgets. Skloot asks us if we want to be petri dishes. Both books make us think hard about our private abilities and our public obligations.