I first wrote the blog entry below last November, a reaction to an important address given November 3, 2010 at the American Society for Human Genetics (ASHG) by outgoing president, Rod McInnes of McGill University. President McInnes's address, Culture: the Silent Language Geneticists Must Learn--Genetic Research with Indigenous Populations, was published in the March issue of The American Journal of Human Genetics 88, 254-261, March 11, 2011.

You can see the first ten minutes of President McInnes's address here on YouTube. Or you can go to the ASHG Web site and pay to view the entire address. Unless you were at the meeting. You should then have been sent login information.

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11/03/2010 (original post date)

I am here at the American Society of Human Genetics (ASHG) annual meeting in Washington D.C. for the much anticipated (in my corner of the world) Presidential Address by outgoing society president, Roderick R. McInnes (McGill University, Canada).

Before sharing some of the exciting highlights of that speech . . . Whoa, the ASHG exhibit hall C is kitted out like a Las Vegas show, or one of those glitzy evangelical mega-churches that have risen up in U.S. American culture since the 1980s. Except these performances are subdued and precise. No instruments or singers. (Although Prez McInnes cracked some good jokes depicting the differences between U.S. Americans and Canadians.) Audience members created a nice low murmur fitting for the dimly lit cavernous convention hall. Blue and teal cloth draped from on high to the floor with huge ASHG logo and artsy looking double helix to backlight the plenary session stage. Gigantic overhead screens run advertisements for upcoming academic and industry meetings, and eventually show the speakers' slides. There is seating for maybe a couple thousand in here. All of this and yet no wireless. Tweet plans disrupted.

While Dr. McInnes speaks of the language of "culture," I think "distributive justice" and more "democratic science," but our sense of the details and recommended changes to research ethics--which are well under way in some quarters--seems shared. Before recounting just the highlights of his talk (he'll publish it in an upcoming issue of the American Journal of Human Genetics--AJHG). I want to thank him again for taking on this topic, and for taking it up so seriously. Pressure has been mounting for years from indigenous critics of genetic research, but meaningful change will also have to come from within the field. Judging by McInnes' citations and they synthetic nature of his account, he reads considerably outside of his specialty areas, delving into cultural anthropology, law, and genome ethics and policy. He put together a coherent narrative for non-specialists in genetic research ethics of why the time is now, as he put it, for genetics researchers to "get inside the metaphorical tent of the indigenous populations" they study.

After cautioning the audience that we should be hesitant to judge earlier genetic studies of indigenous populations by today's ethical standards (heads nodding all around me), McInnes provided highlights of genetic research on indigenous groups contested by those people--i.e. on the Nuu-chah-nulth Tribe from Vancouver Island, Canada and the Havasupai Tribe in Arizona. In these two cases consent was obtained and blood drawn for biomedical research but later used for human migrations research and, in the case of the Havasupai, additional stigmatizing biomedical research unwanted by the tribe was funded. McInnes also noted the smaller controversy that surrounded the Genographic Project's blood draws in Alaska in which researchers were asked to return DNA samples until concerns about inadequate informed consent were rectified.

McInnes highlighted different indigenous cultural beliefs about DNA--some think it is sacred. As late Hopi geneticist Frank Dukepoo put it, "it is part of the essence of a person." Genetics findings may also displant the origin narratives of indigenous peoples (and, I would add, key events in colonial history). If I can expand beyond what Dr. McInnes said, such narratives give indigenous peoples values for living, narrate our common history, cohere us as peoples with common moral frameworks, and tie us to sacred land bases. Both creation and colonial narratives circumscribe our geography, family relations, governance, and identity. Genetic knowledge, fascinating as it is, should not trump these weighty factors.

Beyond “cultural” concerns, McInnes highlighted the imperative to constitute research benefits and outcomes in broader terms. And then researchers need to pay attention to how indigenous peoples and not only researchers also accrue those benefits. Citing the Estonian Genome Project, McInnes noted the types of benefits that communities in that country expect to receive from that research, e.g. better healthcare, better healthcare delivery, technology development, economic development, and jobs. “Why,” he asked, “should aboriginal populations expect less?” Touché.  

Importantly, McInnes called attention to the need for researchers to respect aboriginal jurisdiction of genetic research on their peoples. He paraphrased Deborah Harry of the Indigenous Peoples Council on Biocolonialism (IPCB)--that indigenous peoples are not so much anti-research as they are pro-indigenous rights. Illustrating that some research communities are ahead of others on these fronts he gave us the lowdown on the Canadian Institutes for Health Research (CIHR) Guidelines for Health Research Involving Aboriginal People. CIHR is the Canadian equivalent to our National Institutes of Health--NIH. A few of the highlights of those guidelines:

1. Researchers should understand and respect Aboriginal world views.
2. Researchers should agree to Aboriginal jurisdiction.
3. Communities should be given the option of a participatory research approach.
4. Community consent plus individual consent.
5. DNA is "on loan" to researchers until its return is requested. All secondary uses must be re-consented. (McInnes cited Canadian geneticist Laura Arbour's work and approach to collaborative research throughout the talk. For those of you unfamiliar with her work, check out her "DNA on Loan" article.)
6. Pre-submission community review of publishable papers. (Key point: this review is not to block research findings from being published but to contextualize findings and correct any inaccuracies. This can help avoid stigmatization and other problems. See my Genographic/Seaconke Wampanoag entry for more on how indigenous review/input into publications makes papers more rather than less rigorous.
7. Intellectual property benefits, education, and capacity building in research process should be addressed in a research agreement.

There is a lot more in the CIHR guidelines. What is more, they are in line with changes to research approaches advocated by indigenous critics for years now south of the Canadian border. Check back again. When it’s available, I’ll provide a link to Roderick McInnes’ published address in the AJHG. He also made some interesting points about lessons learned from research on indigenous populations being applied to genetics research ethics with communities more broadly.

With Dr. Rick Standiford I am co-organizer of the spring colloquium series in our department of Environmental Science, Policy and Management at UC-Berkeley. See the file below for a complete list of speakers. Broadly speaking, Rick has invited speakers who focus their research and professional work on the intersection of science and natural resource management policy in California and beyond. The speakers I have invited tend to cross into the field of Science and Technology Studies, especially as related to environment, and including "animal studies." Some of them also do research that falls into the field of Native American and Indigenous Studies. Several of our speakers will highlight the role of collaborative research among natural and social scientists/humanists and the role of communities in participatory research.

The colloquium always happens on Mondays (holidays and spring break excepted) at 4 p.m. (4:10 Berkeley time actually) in Mulford Hall, room 159 on the north side of the UC Berkeley campus. We finish about 5:15.

On Monday, April 18 we heard from Professor Jeff Mount of UC Davis Department of Geology. Mount's talk was entitled "Managing California's Water: From Conflict to Reconciliation." Mount is also the Founding Director of the UC Davis Center for Watershed Sciences. From the UC Davis Web site, I poached the following explanation of Jeff Mount's work:

As the Roy Shlemon Chair in Applied Geosciences, I am engaged in the issues facing the management of California’s water and the rivers that carry it, both now and into the future. My job  is to use my background in geology to think about water over the long-term and at very large scales, and to impart this approach to students here at UC Davis. My goal is to identify and help minimize future water and river management crises in California, whether from scarcity or flood.  It does no good to simply identify problems; solutions need to be crafted and offered in order to be effective. I am lucky enough to be at UC Davis, one of the best universities in the world when it comes to water. Many of us here are committed to the same goal of helping California manage an inevitable, but uncertain future.  We also realize the great value in providing a neutral voice in the tempestuous debates over water, and educating the next generation of water problem solvers.  If not us, then whom?

At left: the Birth of Ka'ahupahau, guardian shark of Pearl Harbor (photo: J. Goldberg-Hiller)

On Monday, April 11, we heard from Jonathan Goldberg-Hiller and Noenoe Silva, both of the University of Hawaii's Political Science department. Their talk, "Sharks and Pigs: Animating Hawaiian Sovereignty Against the Anthropological Machine," explored Native Hawaiian cosmology as it informs relations with such nonhumans. Are there lessons to be learned for imagining alternative "natural resource management" regimes from cosmologies in which nonhumans are in fact relations  to humans, and not only biolgoically but socially? Silva and Goldberg-Hiller also contextualized their work in relation to recent "posthumanist" strands of scholarship that seek to disrupt the division between human and animal. They made the link between such dualisms and the relegation of certain humans within colonial history to the realm of the less human, to the realm of the animal. Violence towards animals (e.g. the State of Hawaii's spectacular massacre of sharks historically as part of its demonstration of its sovereignty) is linked to violence towards those humans (e.g. indigenous peoples) who have been historically linked to animality. The speakers argued that there are real implications for who and what gets to live and die, for whom and what is made killlable in the human/animal split. Furthermore, their work asked us, the audience, to consider what other kinds of regulatory and scientific regimes might be possible when we consider that such a split is not "natural," but political and cultural?

On Monday, April 4, we heard from Shirley Laska (Professor Emerita of Sociology) and Kristina Peterson (Ph.D. candidate) both of the University of New Orleans. Their talk was entitled "The Role of Participatory Action Research (PAR) in Support of the Response to a Multi-Hazard Convergence: Coastal Louisiana and the Engaged Citizen."  Laska is the founding past director of the Center for Hazards Assessment, Response and Technology at the University of New Orleans (UNO-CHART). For 25 years, she has conducted applied research on the social/environmental interface, natural & technological hazards, and disaster response, especially long-term recovery and risk reduction. Since Hurricane Katrina, her work has been focused specifically on lessons to be learned from the event, especially in the realm of community recovery and hazard resiliency both in the urban and non-urban setting. This work emphasizes Participatory Action Research in both slow onset – coastal land loss and sea level rise --and abrupt major disaster events – hurricane Katrina and the BP oil leak. She is the 2008 recipient of the American Sociological Association’s Public Understanding of Sociology Award.

Peterson is a PhD candidate in Urban and Regional Planning and a researcher with CHART. Her professional and academic work is based in citizen participation problem solving as it pertains to reducing vulnerability and increasing community resiliency especially following disasters. For the past six years, she has worked closely with traditional and indigenous coastal communities in Louisiana addressing issues directly related to Hurricanes Katrina/Rita, Gustav/Ike as well as the BP oil disaster. Peterson engages in a Freirian participatory action model of research, which emphasizes the trust relationships and mutual knowledge building between community members and academics. She served as the project manager for a recent research grant with a Louisiana coastal fishing community to develop indicators of community resilience. She is a fellow in the Society for Applied Anthropology and was the recent recipient of the William Gibson Environmental award. Peterson lives in Houma, Louisiana were she pastors Bayou Blue Presbyterian Church (PCUSA). One of her current projects is helping coastal communities form a Gulf coast regional citizens action council (RCAC).

Monday, March 28 we heard from preeminent feminist philosopher of science, Professor Sandra Harding (UCLA), author of Sciences from Below: Feminisms, Postcolonialities, and Modernities (2008) and Whose Science? Whose Knowledge? Thinking from Women's Lives (1991). Following is her talk abstract.

Must All 'Real Sciences' Be Secular? Rethinking Secularism for Multicultural Democracies
For more than a decade, the surprising religious commitments of Western secularism have been documented from a variety of perspectives. Western secularism turns out to be grounded in distinctively Christian, Protestant assumptions. Yet the secularity of modern Western sciences is supposed to contrast them with other cultures' religious/spiritual systems of knowledge of nature and social relations. However, a multicultural democracy must not permit one of its subcultures to direct state policy against other subcultures. How are relations between supposedly secular modern Western sciences and religiously embedded indigenous knowledge systems implicated in this kind of analysis? How, if at all, is the reliability of modern Western sciences damaged by the discovery of their "religious unconscious"?

On Monday, March 14, we were joined by Rob Atwill, Professor and CE Specialist in the School of Veterinary Medicine and the Director of the Western Institute of Food Safety and Security (WIFFS) at the University of California, Davis for a timely talk, "Interface of Environmental Quality and Food Safety: A Case Study of the Salinas Valley E. Coli Issue." (photo courtesy of UC Davis, http://annualreport.ucdavis.edu/2007/food_safety.html). Dr. Atwill gave an interesting overview of the interactions between rangeland practices, wildlife habitat, and produce cultivation in the Salinas Valley and other areas of California. The majority of some forms of produce consumed across the U.S. are cultivated in this "tiny valley." Atwill contests charges of cow-calf operations contaminating spinach fields based on proximity (or lack of it) between cattle operations and leafy greens production, and based on weather patterns, and soil and plant monitoring results. Wildlife contamination of fields, he asserts, is a more likely hypothesis. He asks then, "How can we insure microbial food safely in this environment?" And why did we ever think that we could insure sterile growing conditions? While grazing operations, he explains, are trying hard to accommodate rules and practices of the produce industry but it's difficult due to a patchwork of operations in the California agricultural landscape. All of these problems are spurring a lot of interdisciplinary research in agricultural extension. He ended with a question about pursuing litigation continuously against the growing industry, what will end up is a landscape plowed over. One audience member wanted to shift the conversation to one of small-scale growing---that these pathogen outbreaks don't happen except in large-scale growing, in bagged products. Atwill pushed back a little bit, noting that small-scale growers could experience the occasional contamination and illness. They're not selling to thousands of consumers across the country, thus causing an "outbreak." This was a fascinating and challenging talk for a social scientist with absolutely no background in this area. I left this talk thinking about the difficulties of insuring a risk-free, precisely managed landscape with this large-scale level of production.

On Monday, March 7, we were joined by Jenny Reardon, Associate Professor at the University of California, Santa Cruz in Sociology and in the Center for Biomolecular Sciences and Engineering. Jenny is the primary organizer of the Science & Justice Working Group at UCSC. Her talk, "Science and Justice: Experiments in Collaboration," will outline UCSC's Science & Justice initiative including their Science & Justice Training Program, an effort to train graduate students from different programs to undertake together interdisciplinary research projects. In our department of ESPM the potential is great for interdisciplinary work, but simply inhabiting the same department is not necessarily sufficient to spur deep interdisciplinarity. Jenny focused on the nuts and bolts of the UCSC program, including the opportunities and challenges to crossing often difficult language and methodological barriers as well as physical barriers (i.e. space and who owns it) between disciplines and fields.

On Monday, February 28, our own ESPM Ph.D. Candidate Sibyl Diver (Stephanie Carlson lab) spoke on co-management of Salmon Fisheries among tribes and the state in the Pacific Northwest. Her talk focused on issues of both cultural and ecological restoration and sustainability as well as the complex issues of governance and tribal sovereignty involved. Thanks to all of the students, faculty, and postdocs from ESPM and from across campus as well as interested community members who turned out for the talk. You were an engaged audience. We had a great Q&A session afterward. There is so much interesting research and applied work going on in this department. It is great to share it with people beyond our administrative structure. Sibyl is an example of how ESPM graduate students can lead the way down a path of rigorous interdisciplinary research.