Participation Panel Rapporteur Report, Version B
Genomics and Justice Session 1: PARTICIPATION
(Includes Reardon’s introduction)
5/18/07: 9:15-10:45 a.m.
Rapporteur Report prepared by Jake Metcalf (UCSC Philosophy)
Moderator:
Sandra Lee, Senior Research Scholar, Center for Biomedical Ethics, Stanford University
Speakers:
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
Jenny Reardon [introduction]:
A major goal of this conference and the Science and Justice Working Group is to bring together people who do genomics lab and informatics work, people who work on social sciences and humanities, and people who organize around these issues. So far in Santa Cruz we have been successful in creating dialogue among multiple groups of people. What many of the conference and working group participants have realized is the need to broaden how we think about science and social relations such that we can examine how these relations become institutionalized in ethical and legal frameworks. By calling the event “Genomics and Justice” we hope to generate a perspective that goes beyond the usual boundaries of ethics, which has often been restricted to discussions of autonomy, informed consent, and the measurement of risks and benefits. By no means do we want to indicate that these topics are unimportant, but we hope that a justice-based perspective will help us embrace and redefine “the ethical” in new ways.
One element of the perspectival shift that we hope to perform with this conference is to re-focus on concrete and particular practices in which people on the ground are actually engaged. This way we can raise questions about what exactly we are seeking in biomedical and genomics enterprises. Without a doubt, we are seeking an ethical relationship between scientific practices and society, but we want to push at the boundaries of what it means for that relationship to be ethical. The first three topics for the day—new participatory forms, property, and sovereignty—represent some of the different conceptual frameworks that concern us but do not easily fit under the rubric of traditional or institutional bioethical concerns. The final topic—emergent epistemologies—broadens out these conversations in a way that may help us find some convergence among our concerns.
Reardon discusses the format and goals of the discussions. She notes the importance of acknowledging different “red flags” that arise for those coming from social sciences, life sciences, and humanities. While we cannot settle the issue of what counts as truth, we can find places where all of us can work together, which is part of the ethics of thinking together. To these ends, Reardon suggests a list of questions that we should track throughout the conference in an effort to develop some consensus about the end of each session.
1. What questions need to be carried through the meeting?
2. What questions are important but need to be backgrounded?
3. What do we know? What do we recommend? Are there any norms that we agree about?
4. What don’t we know but want to know? What is the next, collective research agenda?
Sandra Lee:
Lee introduces Joon-Ho Yu.
Joon-Ho Yu:
Yu is concerned with what participation in genomics research means from the perspective of communities of color. He comes from a background in minority health and is now doing some work in genetics. His concerns have been (much like Maile Taualii’s) that some people are being left behind by this research. In addressing the participation question, there needs to be an analysis of social justice implications. From a policy-advocacy standpoint, what is the analysis of genomics that will drive groups and people to be able to take a position and to take action? This analysis requires an interdisciplinary consideration of law, ethics, economics and policy, genetics and genetic epidemiology, and social science research. What different analytic perspectives could be of assistance?
In 2004 and 2005, Yu had the opportunity to work on a project called a DNA Health and Social Justice: A Community Forum on Genetics. This project, funded through the National Human Genome Research Institute [NHGRI], was piloted by Yu’s group at the University of Washington. The aim of the project was to bring together different community groups and institutions to have a conversation related to genetics and ethics. The NHGRI’s goals were to raise awareness about ethical, legal, and social implications of genetics among different communities, and to learn about the concerns of these communities. Through the community forums, NHGRI wanted to engage explicitly with underrepresented minorities and special populations to establish relationships that could influence the ethical, legal, and social implications of genomics research in general.
This program entailed an 8-to-12-month planning period with consultation among the host regional organization, community members, and different community advisory groups to identify topics of interest. The host organization then helped put together a forum where scientists and the community could come and participate. Yu’s group tried to develop a type of participation that would enable community members to help negotiate and define the goals of the forums. An example of the kind of friction involved in such negotiations emerged in the naming of the 2005 community forum at the University of Washington. The forum was first entitled “A Community Genomics Forum”. Through consultations with the community it became clear that this title was incomprehensible to the community and lacked any acknowledgement of social justice as a concern. It also evoked a sort of “quintessential distrust of the feds”. Eventually the title became: “DNA Health and Social Justice: A Community Forum on Genetics.” Although the project initially started off with NHGRI goals (such as establishing more relationships with native communities), the goals of the different community groups were developed and incorporated through complex negotiations.
In thinking about his experience of community participation, Yu notes the performative mode in which dialogue occurs. On the one hand, we can say “don’t we really want these communities to have access to genomics and genomic medicines,” but this question already comes out of a framework in which distribution of such benefits is assumed to be of primary importance. On the other hand, as Maile Taualii articulated, there is a need to acknowledge and validate the historical experiences and present-day injustices related to differences in social status that different groups experience (especially in the United States). If we operate on the basis of scripted narratives, the same sorts of questions come up over and over again. Yu suggests that when we think about forms of participation, maybe we should also think about the different forms or ideas about justice that underlie these forms of participation. We may need to move from an ethics of distribution to an ethics of recognition. Where does responsibility lie when we think with different conceptualizations of justice? What responsibilities are involved in altering research practice and research questions in light of an expanded notion of justice?
Sandra Lee:
Lee introduces Jenny Reardon.
Jenny Reardon:
Reardon wants to introduce a few concrete practices for discussion. In light of Yu’s experiences with the NHGRI community forums, Reardon is curious about the theory of justice and how Yu’s group has been moving forward with it. Specifically, Reardon wants to discuss the International Haplotype Mapping Project, and the Native American Research Centers for Health [NARCHes] and the HapMap community engagement process. She has interviewed some of those responsible for the funding and policy behind these efforts. Reardon’s thinking also comes from her experiences with the Human Genome Diversity Project, where tribes in the U.S. expressed dissatisfaction with researchers who came to them with pre-formed research projects; these tribes wanted more influence over the research being done.
Reardon reflects on several different questions that have emerged in the practice of community engagement in genetic/genomic research:
· What counts as research? A researcher cannot just decide on his/her own to do some research; he/she needs a community partner. But what are the consequences of this demand for partnership? Also, how much change can happen when the change is happening within the already existing system of relationships?
· Who can be a principle investigator? Typically, the United States has valued individuals (and individual creativity) so that funding is awarded primarily to individuals. It’s only with reticence that major funders give money to organizations, and that money is often subsequently distributed to individuals. Thus, it seems that a tribe cannot be recognized as a proper principal investigator.
· Who owns and interprets resulting data? Upon producing data, it is necessary to consider who owns the information: Who has the bundle of rights that allows them to control the data? Control is complex in situations where the data produced concern and affect groups of people. For tribes, there is a concern that genomic findings will center on links with diseases, which will subsequently be associated with the tribes.
· How will data be used in the future? This problem is especially prominent in the Havasupai case. Briefly, the University of Arizona is being sued by the Havasupai tribe for collecting DNA for one use and then failing to disclose or making clear other intended uses. Once data are produced, how can researchers and research subjects control the future uses of this information? Data travel further and faster than the tissues from which they are extracted. It’s in the materiality of genomic research to make the organism (and the information derived therefrom) more transportable. There is thus a question of whether tribes can truly control their participation in this sense.
· How are data given back to the community? Even if a policy of returning data is written into research agreements—as done by the Navajo nation—what does it concretely mean to give back data? The concrete material implications of existing legal and ethical principles are not clear, especially when the materiality of the science is changing all the time.
· Who speaks when the research is actually being presented? Often the scientist is the only person presenting the research, regardless of the participation of community members and partnering institutions.
· What counts as a result? Are we expecting peer-reviewed articles in Nature to come out of research partnerships? (This matters a lot to funding institutions.) Is this the best way to judge the productivity of the research? What are our criteria of success?
Reardon turns to the HapMap Project as an example. The HapMap was committed from the beginning to setting a new bar for community engagement and participation. Early on there was a written commitment that communities would ultimately decide the exact description or label that would be employed to identify their population. Some people who were otherwise skeptical of the need to do a HapMap were convinced to participate because of the offer to give populations control over their samples. This represented a moment of hope that research could be done differently. However, there soon arose dilemmas about how to define communities.
The HapMap Project showed that it matters who asks what a community is. Communities often claim that they know exactly who the community is, so why should the question be asked at all? For the purposes of the HapMap, groups at the NHGRI must define communities in practice. In the HapMap project, the NHGRI purposely did not choose small well-defined populations and did not choose indigenous populations because of the ethical argument that it would pose too much risk to the population, in terms of potential identification and discrimination. NHGRI argued that large majority populations would not face the same risks. But what is a majority community? How would it practically be defined in terms of genetic heterogeneity? Which researchers would have connections to which communities? This is where the science of communities came into play, and the insight of anthropologists was necessary. Unlike the Human Genome Diversity Project, there was no community simply presenting itself to the researchers of the HapMap Project. The communities had to be constructed and there were numerous possible ways to do this. Those involved in the HapMap project were defining communities as they engaged in research.
Some difficulties in community definition and naming arose in Japan, where the population wanted to be known as “Asian.” But what about samples from China? Are they not Asian? Are they just Chinese? Although the communities came up with names, the NHGRI sometimes had to say no. Rather than negotiate these names, they fell back on the need to precisely define the community. While precisely defining a research population is necessary for good research design, in this case “precision” was not concretely defined. In practice, it meant geographically-based precision (e.g., Japanese-in-Tokyo). However, there were problems with this approach because people in Tokyo, for instance, come from many different places, belying the assumption that a given population (or sample) has been in one place for a long time. How much does this assumption hold for present populations? Also, how meaningful is the authority of community advisory boards when the existence of defined populations and communities is so questionable? In light of these challenges, there has been a shift back toward expert definition of populations with limited reflection on the criteria used to define these groups.
Reardon asks whether the kind of governance behind such community engagement processes created the dilemmas that arose. Maybe these problems have not been thought through well enough, but maybe they are nonetheless based on something that is worth pursuing. Reardon reflects on “the idea that there’s democracy with an ideal of participation as if you just add participation to science without thinking about the emergent problems. You can’t just add an already existing ideal to an already existing set of practices. You actually need to negotiate these new practices if you want it to work. Science and ethics are always already being done together. The question is not whether, but how, you do science and ethics together.” Reardon thinks it is necessary to do science and ethics together in a more reflective manner.
Sandra Lee:
Lee introduces Deborah Gordon.
Jenny Reardon:
Reardon thanks Gordon for filling in for the scheduled speaker at the last moment.
Deborah Gordon:
Gordon’s talk centers on her experiences with the Toscani in Italia portion of the HapMap project. She understood the HapMap project as an attempt to get “ethical blood” or to involve communities in ethical genomic research. Gordon emphasizes that she did not enter the project naively, and that she was in close contact “with folks who had been critical of the efforts of the NIH, so I was alert to all of the problems.” Gordon received a promise of transparency from the NIH and “asked them every single query that I had”. From the start she was skeptical as to “why we need this kind of genetic research to cure diseases when we already know that most of the diseases people suffer are because of poverty.” Ultimately, she felt it was a worthwhile project that could open up discussion about informed consent and community participation in genetic research (which had not received the same attention in Italy as it had in the United States).
One of the challenges Gordon faced involved the process of determining what constitutes a community and how that community would be defined (or would choose to define itself). The researchers, in truth, were seeking a sample from Southern Europe; the choice of a Tuscan community was “completely arbitrary”. Gordon notes the conflict between allowing communities to choose their own names/labels and the fact that the research project itself was really an “imported” one.
Gordon worked to “produce participation” in a community that did not have a strong prior interest or investment in the research topic. Yet “at some point all the participants were extremely pleased with it, cut their teeth on the science and realized they really could participate, and then wondered why they had never been informed about this kind of research before.” The HapMap effort in Italy, which included standard informed consent procedures, departed in significant ways from existing models of participation in Italy: “The previous model was that their doctors would act as mediators between patients and geneticists.” In Italy, trust relationships were central in the process of subject recruitment, and subjects would choose to participate or not to participate based on these relationships. Because of recruitment difficulties in the initial protocol, Gordon turned to community doctors to aid in recruitment by writing letters to their patients. This strategy drastically increased participation. Although Gordon’s team utilized “a real informed consent” process, engaged with community advisory boards, and attempted to be “explicit about everything”, Gordon became acutely aware that informed consent documents do not and cannot anticipate and articulate all of the risks involved in participation. In the end, it truly is a matter of trust. There is no protocol of informed consent that can allow the researcher to be at ease: “You must take responsibility, which means losing sleep.” Gordon reports that, as a consequence of this experience, she “really understood responsibility for the first time when it came to collecting blood samples.”
Gordon believes that some aspects of the effort to build community participation in research are a “farce” (such as telling communities they can name themselves, and then rejecting the names they choose for various reasons). But, overall, her experience in Italy helped Gordon to recognize and deal with the power differentials involved in research relationships. She concludes that, for a researcher in a powerful position, it is important to call a favor a favor: “If you need help from them, ask. If it’s a power relationship, start an exchange: you give blood and we’ll give you this that matters to you.”
Discussion:
Malia Fullerton:
Fullerton asks Yu how he has called in favors of community partners and others in his work with the genomics forums, and to what end.
Joon-Ho Yu:
Yu replies that his group was interested in creating something that could be replicated across the U.S. in different regions. Through the community forums, he was able to generate some excitement and discussion about the legal and ethical aspects of genetic research. Yu points out that he too was called to participate in the forums as a favor, and he had to struggle with the ethics of his responsibility to the communities with which he worked.
Cori Hayden:
For Hayden, this panel raised questions about the creation of participation where relationships and communities are newly developed versus participation in existing communities. Hayden points out that research relationships have always been somewhat abusive and exploitative. How are those relationships transformed when they are codified and made formally accountable?
Deborah Gordon:
Gordon points out that she refused to work with anybody she knew and that she deliberately started the project in a new community. She didn’t like the idea of using her existing relationships with people (potential participants) to benefit her research. She did, however, ally herself with a respected cancer prevention organization.
Jenny Reardon:
Reardon mentions critiques of the Human Genome Diversity Project and of NGO’s that have been speaking for communities, like RAFI and the World Council of Indigenous Peoples. A common critique is that, rather than relying on intermediary organizations, “you have to take this to the people, the grassroots.” But, Reardon asks, “How do you go to the people? You are always going to bring a set of existing relationships.” Reardon finds it problematic to critique indigenous organizations for being organized and producing knowledge. The grassroots argument implies that researchers should seek out “pure” people uninfluenced by existing relationships, particularly the “research naïve” and the “treatment naïve”.
Deborah Gordon:
Gordon adds that organized groups and expert representatives have more veto power and are more informed than people at the grassroots level. She points out that it is not by accident that researchers “go to the people”: the “people” often know nothing of the issues at hand. Mediators and protectors are fundamental.
Kaushik Sunderrajan:
Sunderrajan highlights the importance of conceptualization work. He mentions Derrida’s claim that we need to think of ethics in terms of futures yet to come rather than those that will be—“futures without which there is neither history, nor revenge, nor promise of justice.” Sunderrajan appreciates Reardon’s call for more reflexivity when researchers aim for more participation, but what happens when they have more reflexivity and then need more participation? Deconstruction is not nihilistic, but it gets at the endless risk involved in ethics.
Jenny Reardon:
Reardon indicates that she agrees with Sunderrajan and clarifies her conviction that we cannot enter these projects knowing what it is that we want. We have to be more open to the practices emerging from the convergences and assemblages that take place.
Reardon asks Gordon to reflect on the differences between the NHGRI project and the Human Genome Diversity Project. Reardon’s sense is that the Diversity project was much more insistent on how the research must be done, while the HapMap Project may have been open to the sort of emergences she is talking about.
Deborah Gordon:
Gordon acknowledges the tremendous amount of naiveté and good will in the HapMap Project. She tells Reardon that the openness of a research endeavor depends on the stage of the research project. At the beginning there is always openness, but once a pattern is established, it becomes ritualistic and carries “ethical baggage”.
Donna Haraway:
Haraway draws attention to the notions of trust and responsibility in the conversation. The dominant Anglo culture has been future-oriented in the sense of erasing the past and dissolving problems by introducing an always better future. Haraway feels that much of the existing regulatory and rights discourse is a symptom of a future orientation that focuses on future risk rather than accepting the risk of letting the past and present enter the discussion (which is “a very scary thing to do”).
Haraway also mentions that there are both research-naïve populations and research-saturated populations. Also, there is naïveté in the sense of not caring and naïveté in the sense of suspicion. These different scenarios raise different questions around trust and responsibility. Haraway “would like to hear more about the kind of ethnographic detail necessary to give a thick description of how you can operationalize responsibility.”
Deborah Gordon:
Gordon thinks Haraway’s question is fundamental. Populations “don’t need to be told there’s risk in the world.” Currently, researchers attempt to “exorcise [risk] by writing every possible outcome down.” Gordon comments on the irony of assessing and enumerating future risk: “Could you imagine getting a prophylactic mastectomy and walking out of the hospital and getting hit by a truck?” Life is unpredictable. Gordon also points out that the populations she worked with were less bothered than she was by some of the ethical dilemmas that arose in her work: “They’re not naïve about power.”
Jenny Reardon:
Haraway’s question leads Reardon to rethink the question of emergence, and how ignorance of (or failure to consider) history created problems for the Human Genome Diversity Project. Such projects must be contextualized within their histories. It is important to recognize that justice has not been served all along and to evaluate why we care about future justice if past injustice has never been addressed.
Karen Barad:
In talking about participation and justice, we are also talking about epistemology. Barad asks Reardon to speak to some of the epistemological issues that scientists faced with regard to the creation of communities in the Human Genome Diversity Project.
Jenny Reardon:
Reardon describes “a real struggle” over what would count as a population. [For more information, see the Guidelines for Referring to the HapMap Populations in Publications and Presentations.] The population geneticists wanted to use ancestry but they were limited by what they could practically access. This dilemma appeared most clearly with the Chinese samples in the HGDP. First researchers sampled Chinese communities in Denver and later it became possible to do sampling in China. The scientists preferred the latter because they assumed those living in China were closer to ancestral samples. This created controversy among the people in Denver, who asked: “Are we less Chinese? … We are much more isolated and therefore possibly more Chinese.” Reardon mentions that, as a consequence of this controversy, the scientists stopped claiming that the samples they collected were representative of any population. But if the samples only reflect the individuals who participated, then what do they mean?
Malia Fullerton:
Fullerton points out that despite all of the participatory work, the complex negotiations, and the controversy, samples are in practice evaluated and analyzed as scientists choose: “Japanese and Chinese samples get relegated to three-letter acronyms and we always think of them and analyze them together as Asian.” All of the “angst” over participatory naming disappears in scientific practice.
