Participation Panel Rapporteur Report, Version A
Genomics and Justice Session 1: PARTICIPATION
Rapporteur Report prepared by Travis Williams (UCSC Sociology)
Sandra Lee, Senior Research Scholar, Center for Biomedical Ethics, Stanford University
Joon-Ho Yu, Doctoral Candidate, Institute for Public Health Genomics, and Research Assistant at the Center for Genomics and Healthcare Equality, University of Washington
Jenny Reardon, Assistant Professor, Department of Sociology and The Center for Biomolecular Sciences and Engineering
Deborah Gordon, Professor, Department of Anthropology, History, and Social Medicine, UCSF; and former Principal Investigator of the Toscani in Italia portion of the HapMap Project
This session focused on problems of “participation” and the moral/ethical dilemmas and paradoxes in relationships among researchers, subjects, and potential subjects.
Joon-HoYu reflected on his participation in the forum, DNA Health and Social Justice: A Community Forum on Genetics. Yu discussed the underlying values that structure symbolic ethical rituals, the politics of recruitment and participation, and the types of dialogue that animate participatory processes. Yu observed that our discussions about genomics and justice often involve different ideas about what justice means, and he asks how we might learn to see, acknowledge, and recognize these different notions. Yu suggested that when we think about participation and justice, we should think about the different forms and ideologies that inform discourses of justice. Yu described his own and other attempts to broaden the field of public genetics to include legal and ethical values in its epistemology. He believes that conscious normative orientations and the recognition of ethical obligations have changed the type of work that he and his colleagues are doing in the ELSI field (ethical, legal, and social implications) of genomic research and development.
Reardon discussed experimental “concrete practices” that are being tried to create new ways for research subjects to participate in genomic research. She focused on the community engagement process of the International Haplotype Mapping Project, and the Native American Research Centers for Health (an Indian Health Service/National Institute of Health funding mechanism designed to increase tribal control of research design and conduct). Reardon addressed concrete dilemmas that have arisen in each of these efforts to change by whom and in what manner scientific research is conducted. These included: new freedoms to define "research" curtailed by the necessity of established institutions to recognize and fund research; uncertainties around what it means to "control data"; transfer of responsibility for the outcome and effects of research from state institutions to tribes; interests served. Reardon also reflected on the tensions between western individualism and more collective ways of understanding personhood, the relationship of property rights and scientific data, and a wide range of questions, ironies, and paradoxes involved in defining communities and populations. Reardon also asked how change can happen when change is generated within (as opposed to outside) the current system. Does real change require us to go beyond the coordinates of the current policy-making apparatus? Both Reardon’s and Yu’s talks suggest that broader political questions about democracy are implicated in our approaches to community/individual participation in genomic research.
Deborah Gordon offered a critical reflective analysis of her research with Tuscans in Italy (Toscani in Italia) as part of the HapMap Project. She mentions the utter fascination of Americans for the Human Genome Project and the relative disinterest in Italy. Gordon discusses the tensions and paradoxes in relations among community members, genome scientists, and anthropologists. Genomic research expansion entails questions about the production and distribution of social goods. Ethical responsibility is a central theme in Gordon’s talk. She suggests that “sleeping soundly” is not an ethical option with initiatives like the Human Genome Project. Those involved in genomic research must accept responsibility and the anxiety that accompanies it. Gordon’s take-home message is to “call a favor a favor”. If you want to recruit participants for genomic research, then be clear about your interests and intentions as a researcher. Do not dress it up as a democratic initiative for “communities” who have no immediate interests in the project.
Despite her professed desire to be critical and cynical about the Human Genome Project, Gordon acknowledges that she cannot simply dismiss such an influential initiative. For better or for worse, the Human Genome initiative “enacted something in Italy that was brand new and that people got excited about.”
Fullerton turns Gordon’s comment about “calling a favor a favor” onto Yu and asks how Yu, as a social scientist and thus an expert, has called in favors as part of his participation in the DNA Health and Social Justice Community Forum on Genomics. To what end did he call in these favors?
We are trying to broaden what can be considered part of the field of public genetics. We wanted to know what use a forum might have for us and for communities. Yu describes the project in fairly broad, open, pragmatic terms: What might be the value of this thing?
Hayden points out how comments in each of the panel presentations connect to the issue of the “deployment of participation as an end in itself.” She highlights the distinction between the creation of participation where there is no prior relationship and modes of participation involving the transformation of already existing relationships. In some sense, new initiatives always build on existing relationships, which are already rich with “messy kinds of reciprocities that were never equal.” Hayden is interested in what happens when existing relationships must be “redone” and “codified and made accountable in very different ways.”
Gordon explains that she purposely avoided establishing new uneven reciprocities with people whom she had worked with previously because to do so would be unethical.
There is all this talk about having to go to the people, to get to the grassroots level. There is also a preference for naïve (treatment, research naïve) populations. But all groups are always already involved in relationships that precede the research initiatives. In terms of all the critique launched at organized community groups and other power-knowledge apparatuses, are we sometimes critiquing these institutions for simply being organized and producing knowledge? Reardon says that, in the course of our critiques, we should consider the open-endedness and humility of some organized group efforts. She asks us to evaluate on what basis we are critiquing those whom we critique.
Gordon acknowledges the knowledge-power differential between average community members and the organized groups that represent them. It is not by accident that researchers wish to go directly to the people; “the people” are attractive targets precisely because they lack the necessary knowledge to make critical, informed decisions. Everyday lay knowledge is inadequate for understanding the larger social, political, and scientific issues at stake in genomic research and other R&D initiatives.
Sunderrajan highlights the importance of “concept work”. Our concepts are always grounded in past experience, and thus the experience of the present constantly exceeds existing conceptual frameworks. Sunder Rajan recognizes “the vital importance of thinking with Jacques Derrida” and laments the progressive dismissal of deconstructionism and post-structuralism. He advocates an ethical perspective derived from his reading of Derrida, specifically concerning the relationship between temporality and ethical vision. Sunder Rajan focuses on Derrida’s discussion of the suspension of ethical commitments for a future yet to come, e.g. that which does not yet exist in any solidly discernible form and which necessitates an ethics that is yet to come and that cannot exist in this moment.
We can’ t come into these projects knowing what it is that we want; we have to be willing to emerge and take risks. Reardon asks Gordon how open those in the NHGRI were to an emergence in this sense. Reardon and Deborah Gordon discuss the politics of thinking ethics as an emergent practice, and the role of experts and mediators in general.
Speaking to the notion of emergence as a way of thinking about future-oriented possibilities for justice, Haraway talks about the problem of erasing the past or attempting to avoid the trouble of the present by producing something always better in the future. She mentions anthropological work critiquing the language of emergence and the ways in which emergence rhetoric can prevent the serious and necessary inheritance of the past in the present. She talks about how dominant industrial populations, especially Anglo-industrial cultures, have been oriented towards the future and the desire to produce an always better future. This position can prevent them from inhabiting the present thickly. One of the consequences of not inhabiting the present thickly is not understanding how to inherit the past in the present, which is absolutely crucial to the question of trust and responsibility, perhaps more so than “emergent future solutions”. Haraway mentions the instrumentalization of morality-producing apparatuses and describes the particular kind of morality these functional modalities produce as “symptomatic” of a particular kind of future-oriented Anglo-industrial ethical standpoint. Haraway makes a plea for an ethical sense of risk that entails a willingness to “let the past in the present in” which, she admits, is a very scary thing to do. She ends her comment with this question: “When no one, least of all the very savvy anthropologist, controls the actual flows of value-added moneys, or, many kinds of things that are outside those folks that we would trust, how do you operationalize trust and responsibility, if you take seriously this question of inheriting the past?”
Gordon acknowledges that Haraway’s question is fundamental. Gordon adds that people do not need to be told that there is risk in the world; there is no shortage of consciousness regarding the unpredictability of life as such (not merely certain genetic risk factors that may or may not intervene in life). Life is "damned unpredictable", and people know it. Those research subjects with whom Gordon worked were not naïve about the past or about power.
Taking up Haraway’s previous comment, Reardon talks about the importance of framing things in their historical contexts. When she was writing about the Human Diversity Project, it seemed to her that the really important things that its organizers didn’t understand involved the historical components of the project; histories affected the entire initiative. Jenny says that there is a need for a different kind of language around emergence because at present the language of emergence may lean disproportionately towards future-oriented or teleological narratives.
Deborah adds that the identity of the Tuscans was very local and very historicized, and says that the project organizers had not expected this crucial element of Tuscan cultural identity.
Barad reflects on Reardon’s comments and the involvement of epistemological questions/dilemmas in our discussions of participation and justice. Barad asks Reardon to discuss the epistemological issues that genomic scientists face inside and outside the lab. For instance, what difficulties do scientists experience in conceptualizing and framing their own work, and how is this manifest in discursive confusion (such as problems in defining terms like community and population)?
Reardon describes a real epistemological struggle over what could count as a population, how a population or community should be defined (by whom and for whom, and under which particular circumstances). This appeared in disputes over naming Chinese and Japanese populations who contributed to genomic research initiatives. [For more information, see the Guidelines for Referring to the HapMap Populations in Publications and Presentations.]
Fullerton points out that, in scientific practice, Japanese and Chinese samples are combined and relegated to a three-letter acronym. They are always analyzed together regardless of what participants prefer (and regardless of the extensive attention paid to the inclusion of community members in the naming of their own populations). In the practice of data analysis, geneticists classify populations at their own [the scientists’] convenience regardless of how subjects wish to identify themselves.