Commentary by Marsha Hurst, Ph.D., Narrative Medicine Program,; faculty member and Research Scholar at the Institute for Social and Economic Research and Policy, Columbia University; co-editor with Sayantani DasGupta of Stories of Illness and Healing: Women Write Their Bodies (Kent State University Press, 2007)
“When in Doubt, Spit it Out.” (1) It was fashion week in New York City, and the DNA testing company 23andMe was taking advantage of the party mood to promote its spit-based DNA testing product, now being offered at a discounted rate of $399. Normal business at 23andMe is not conducted at celebrity spitting parties but online, where you can order a test kit, send in your saliva, and a month later get the pieces of an 89-gene DNA puzzle, that can be building blocks for family ancestry stories and future illness narratives. In addition to connecting with past and future, this 2.0 version of the narrative, situates you as part of a current social network so that your story can be shared with others in multiple configurations of family and genetic connectivity. The company “democratizes” your personal results by making them invitations to network, as in “You are invited to join the group Slow Caffeine Metabolizers.”
I am fascinated by this story of the 23andMe spitting party and its place in an area of study, research, and analysis some now term “narrative genetics”: the exploration of how genetic understanding and belief are expressed through story, and of the impact of those narratives on our person, our society, and our culture. In order to better understand narrative genetics, I have organized, with the help of Sayantani DasGupta, and our colleagues in the Narrative Medicine Program at Columbia an interdisciplinary faculty seminar on Narrative Genetics. The seminar, open to the public, is sponsored by ISERP-the Institute for Social and Economic Research and Policy at Columbia University Topics include genetic narratives in film, reproduction, advocacy, clinical practice, family narratives, disease narratives, and genetic narratives of race.
What are the stories we tell about ourselves, our identities, our families, our communities, our society, and how have these stories become “geneticized.”? Narrative genetics is about how and why we use genes to tell these stories. And what these genetic narratives then, in turn, can teach us about the way our society explains health and illness, personhood and community. Certainly for much of this new millennium we have, as anthropologist Kaja Finkler had already noted in 2001, “seen an explosion of research in genetics and on genetic inheritance,” and with that an explosion of popular interest-and popular expression. (2) Amy Harmon’s series on “The DNA Age” in the New York Times only confirms a mainstream fascination with genetic stories, and with the essentializing “me-ness” of these reports. These stories about genes are about our uniqueness-but also connect us with our commonness in ways that appear to be reassuring, even if they are surprising. Searching for who we are through genetic testing has become a construction for the American “roots” narrative.
Narrative Genetics as Recreation
A year ago, prominent scholars published an article in Science on “The Science and Business of Genetic Testing,” addressing a concern that ancestry genetic testing was treated recreationally-and promoted as such commercially. (3) Testing results told a genetic family story that was not only simplistic, incomplete and inaccurate, but also had important personal and policy implications. “Recreational genetics” came to mind again as I sat down to write this blog about narrative genetics and was diverted by that 23adMe spitting party headline.
Aside from the fascinating frivolity, the contextualizing of personal genetics in recreational and social space, the party report also tells a familiar story of health commerce and medical marketing. Imbed a product in the world of celebrity, of glamour, of wealth, and it will sell to those who aspire to this world. And because both celebrity and marketing are about making private lives public, it reverses much of the focus of genetic public policy, which has been on the privacy of genetic information and the protection of that privacy. (4)
Besides commercial use, public genetic narratives have been widely used for advocacy purposes-particularly to generate funding for research into genetic conditions. In the 23andMe narrative entrepreneurial success and genetic disease advocacy are intertwined. Sergey Brin, a co-founder of Google and the husband of Anne Wojcicki, co-founder of 23andMe, has not only had his DNA tested by 23andMe, but took his results a step further than the party or the company’s social network: Brin announced on his personal blog, “Too,” (Sept. 18, 2008) that he had a mutation of the gene LRRK2 gene, known as G2019S, which increases his risk of getting Parkinson’s disease, a condition from which his mother, who also carries the gene, suffers.
Brin tells his family story as a narrative of personal genetic risk, of family caring, and of genetic disease advocacy. It is also a familiar American narrative in which great wealth drives medical research. The family has already endowed a professorship to support research into Parkinson’s and Brin has framed the personal knowledge he gained through 23andMe testing as an “opportunity” to support advocacy and research into Parkinson’s. In fact the company 23andMe also supports research into genetic conditions by encouraging non-moneyed contributions: Spitting parties are encouraged to gather “anonymized” saliva samples for genetic research purposes.
Genetic Narratives as a Public Good
A parallel project to the 23andMe corporate enterprise –the Harvard-based, but privately funded, Personal Genomes Project –also constructs personal genomic stories as public information, but for the larger “good of the general public” (see Mission Statement). As an “experiment in public access” (5), volunteers are recruited to share their “genome sequences, related health and physical information, and [to report] their experiences as a participant of the project” (PGP Mission Statement). The first results of this Project were recently released. (6) Celebrity in the non-profit academic world is constituted somewhat differently: The PGP-10 — the first 10 volunteers–include a mix of mainly science and medicine entrepreneurs, academics, and investors, led by George Church, a Harvard professor of Genetics. Members of the PGP-10, like the celebrities at 23andMe parties, are expected to inspire by example. In keeping with the academic and public responsibility narrative, however, the 100,000 volunteers accepted into the PGP must go through a complicated informed consent process, including a test of basic genetic knowledge. Is there is a hint of an old “positive eugenics” narrative here? Is there a challenge to the concept of informed consent when consent is given to a social experiment where risks can barely be enumerated?
Both the for-profit and the not-for-profit versions of making the personal genome story public beg the complex question of whether, in this genomic age, anonymity is even possible. Our body parts and bodily fluids scream out our identity in any disembodied state. The Personal Genome Project openly questions whether “guarantees of genome anonymity” are even “realistic.” As a society we then must consider the implications of constructed genomic narratives, in the same way as the constructed narratives of race, gender, and disability in America are being critiqued.
Genetic Narratives as Advocacy
To the extent that genetic stories are personal, familial, entrepreneurial, or even activities of individual choice and private financial means–they are in the “private” sector, although personal genome stories are both privatized commercially and publicized in social and socially “responsible” spaces. Genetic narratives that empower the private funding of scientific research enter a kind of private-public realm with unclear and easily transgressed borders. His Brother’s Keeper, the story of how Jamie Heywood directed an all-out war of “guerilla science” to save his brother from the lethal ravages of amyotrophic lateral sclerosis (ALS), illustrates the power of a family genetic narrative that drives an extraordinary research effort.
In our Narrative Genetics seminar, we will hear a very different story: Huntington’s disease as a family narrative of illness and risk. Alice and Nancy Wexler’s work combines writing, research, and advocacy in a narrative of families and communities that has guided scientific genetic research; and, as an integral part of that work, they have told the stories of the meaning of this disease for families and communities in vastly different places, cultures, and times.(7)
As a health advocacy educator I am keenly aware of the power of personal stories to drive public policy, and stories of the impact of genetic disease on families and communities have been a compelling engine for organizing and action. Some have advised caution as we take public action based on private narratives (8), but we also know that our personal stories can compel us to public beneficence. Rachel Grob, who has elicited the stories of parents of children with cystic fibrosis, will discuss in our Narrative Genetics seminar how parent advocacy-and narratives of “urgency”-can impact policies like newborn screening that have become public “health” mandates. Gaining thoughtful perspective and understanding of these genetic stories and their impact will be increasingly important-and increasingly difficult-as the genetic explanatory paradigm gains force through genetic knowledge and power through use.
The tension between narratives that tell a story of the centrality of the individual in society and narratives that tell a story of the centrality of the public interest is present-if not explicit-in the 23andMe story. The states of New York and California have told 23andMe and other biotech companies-including Navigenics and deCode Genetics –that sell genetic tests to the public (13 companies in California and 31 in New York) to “cease and desist” these direct sales. (9) The move to regulate commercial genetic testing is countered by a growing biotech industry that argues genetic information is part of an individual’s right to her own personal information. Do genetic tests disclose medical information or personal information, and is there a meaningful line between the two? The public policy challenges to private commerce in genetic testing cross that infinitely contestable American frontier between private enterprise and public responsibility in health care.
One of the presentations in our Narrative Genetics seminar will be by a research group with which I have been working. (10) We have been asking pregnant women to tell us their family stories: What does heritability mean to them? What do they think is passed on to their children, and how? Our primary purpose is to develop ways to educate genetic counselors in “narrative genetics,” teaching them to elicit and honor the stories their clients tell about inheritance in their families and their cultures. But our findings also remind all of us who are sometimes overwhelmed by the power of the genetic paradigm-and the potential of genetic science– that when we tell our own stories they may be more complex and nuanced cultural stories, stories about heritability in which genetics plays a very narrow role. When the women we interviewed told their own family stories, they clearly connected with ethnic, racial, religious, geo-cultural,and socio-economic groups but their stories of community were not told through a genetic lens.
So I will end this blog entry with a family story. When I was eight, and my mother eight months pregnant, a family friend in the medical profession convinced her that if she spit into a test tube, and the saliva looked brown under a microscope, she would give birth to a son-a much-valued outcome for a family with two daughters. My new sibling was, indeed, male, and the saliva had, indeed, been brown-but so, confessed my mother, had the Hershey chocolate bar she secretly consumed before spitting. It has become a family story that evokes an entire “photo album” of my young parents, happy and healthy in post-War America, and expecting ever more of the same. The story is set in a climate so optimistic that they could believe in a Stevenson presidency. Spitting into the test tube was part of the fun-and part of the hope of a post-war America. We take for granted today the ability of genetic science to tell us the sex of a fetus, but in 1954 it was part of a narrative of scientific promise, a story in which science is put to work as commercial technology, making every home hum with appliances. It was also, of course, a story of gender and family, imbedded very much within the world of the Feminine Mystique, a world in which a family without sons was an incomplete tale.
1. Allen Salkin, New York Times, Sept 14, 2008
2. Kaja Finkler, “The Kin in the Gene: The Medicalization of Family and Kinship in American Society,” Current Anthropology, Vol 4, No 2 (April 2001), p. 235.
3. Deborah A. Bolnick, Duana Fullfiley, Troy Duster et al., “The Science and Business of Genetic Ancestry Testing,” Science, Vol 318 (19 October 2007) [accessed October 18, 2007].
4. For example, the Genetic Information Nondiscrimination Act, signed into law last May after over 12 years of unsuccessful attempts at passage.
5. George Church. Genomes for All, Scientific American , January 2006, p.53 [accessed 10-22-08].
6. Amy Harmon, “Taking a Peek at the Experts’ Genetic Secrets,” New York Times, October 19, 2008.
7. See, for example, Alice Wexler’s books, Mapping Fate (University of California, 1995) and The Woman Who Walked into the Sea (Yale University Press, 2008), and her article “Chorea and Community in a Nineteenth-Century Town,” Bulletin of the History of Medicine – Volume 76, Number 3, Fall 2002, pp. 495-527.
8. See also Rebecca Dresser’s book, When Science Offers Salvation: Patient Advocacy and Research Ethics (Oxford, 2001) as well as John McDonough’s classic article in Health Affairs, “Using and Misusing Anecdote in Policy Making“.
9. Andrew Pollack, “Gene Testing Questioned by Regulators,” New York Times, June 26, 2008.
10. This group is based at Sarah Lawrence College and funded by a Jane Engelberg Memorial Fellowship award.