Public Forum Rapporteur Report
Genomics & Justice Day 1: PUBLIC FORUM
06/17/07
Rapporteur Report prepared by Dan Narey (UCSC Sociology)
Moderator:
Donna Haraway, Professor of History of Consciousness, UCSC
Speakers:
Robert Cook-Deegan, Director of the IGSP Center for Genome Ethics, Law & Policy, Duke University
Caitlin Deck, Director of the Office of Research Compliance Administration,UCSC
David Haussler, Professor of Biomolecular Engineering, UCSC
Maile Taualii, Associate Director of the Urban Indian Health Institute
The Genomics and Justice Public Forum was held on the evening of May 17, 2007, on the campus of UC Santa Cruz. The event was well attended by students, faculty, and other members of the UCSC community.
Jenny Reardon:
The public forum began with an introduction by conference organizer Jenny Reardon. Reardon presented the conference as an opportunity to begin a “new kind of conversation” that would draw on the expertise and ideas of diverse participants in order to reframe what “ethics” and “justice” mean in the context of genomics—an emerging field of scientific knowledge and biomedical intervention made possible by developments in DNA sequencing technology. Reardon pointed out that one of the central questions that must be addressed is “who should be at the table” in this and future discussions about the implications of genome science and genetic technologies for social justice.
Robert Cook-Deegan:
Robert Cook-Deegan, Director of the Center for Genome Ethics, Law, and Policy at Duke University's Institute for Genome Sciences and Policy, was the first presenter. Cook-Deegan began his talk by stressing the importance of interdisciplinary collaboration for addressing the complex set of issues raised by genomics. His presentation focused on the patterns in public and private ownership of intellectual property in genetic technologies and information over the last two decades. Providing some historical context, Cook-Deegan explained that since the early 1990s, private funding for research and development in biotechnology has exceeded public funding; genomics has “grown up” during this period of market-driven research and development. While some have expressed concern that patents on technologies by private firms would restrict the availability of those technologies for scientific research, Cook-Deegan’s findings did not support (or necessarily refute) this concern. He went on to argue that a more significant concern for social justice relates to the question of who benefits financially from new technologies. This concern points to a whole set of legal and policy issues regarding intellectual property regimes.
Caitlin Deck:
Caitlin Deck, Director of the Office of Research Compliance at UC Santa Cruz was the second presenter. Deck addressed the role of institutional review boards (IRBs) in policing researchers’ compliance with ethical standards, and she argued that IRBs are limited in their ability to address social justice issues in a more proactive fashion. Because IRBs are appointed by the institutions themselves, the primary role of an IRB is to protect the institution from litigation. As a consequence of the history of exploitation in medical research, IRBs have the most stringent oversight when it comes to research on “human subjects.” However, most research in the field of genomics is defined in such a way that it escapes such oversight—it is not research on “human subjects,” only on their genetic material. Deck expressed reservations about expanding the definition of “human subjects research” to include genomics because this might lead to reductionist and politically dangerous definitions of the “the human.” Deck pointed out that scientists often view IRBs as obstructions to research, and this would likely be an impediment to any attempt to expand the role of IRBs in research institutions. One area where IRBs have had some success, however, is in promoting diversity among research subjects.
David Haussler:
David Haussler, Professor of Biomolecular Engineering and Director of the Center for Biomolecular Science and Engineering at UC Santa Cruz, was the third presenter. Haussler emphasized how advances in genome science would lead to greater knowledge about the causes of disease, which could potentially support initiatives for the promotion of public health. He explained that some of the work that genome researchers are doing involves looking for systematic differences between individuals who have been diagnosed with a particular disease and those who have not. For most diseases, Haussler pointed out, there are multiple factors that would increase one’s risk of developing that disease. Genetic differences are just one of those factors, but by isolating the genetic part of the “cause,” we can then determine the relative influence of other factors. For the science to advance, Haussler argued, “we as a society have to become comfortable with people genotyping us.” At the same time, we need policies that will prohibit discrimination based on genetic differences so that there will be less risk involved in making an individual’s genetic information available to the public.
Maile Taualii:
Maile Taualii, Associate Director of the Urban Indian Health Institute in Seattle, was the final presenter. Taualii began her talk by asking what justice really means for indigenous people in the context of genomics, when “justice as a whole has not been addressed.” From her own perspective as a Native Hawaiian, Taualii made the point that justice requires a recognition of past injustice. For communities like her own, there are risks involved in participating in the research process, and there are risks involved in staying out of it. Taualii explained that the relevant question for indigenous people is, “How can we be engaged in the research process and protect our communities?” Some issues of concern for indigenous groups include potential conflicts between scientific claims about population histories and the people’s own narratives about their past, as well as the possibility that genetic information could be used to challenge the rights of indigenous communities to define their own criteria for membership.
Discussion:
John Brown Childs (Professor of Sociology at UCSC):
Responding to an earlier point about efforts to enact laws against discrimination on the basis of genetic information, Childs commented that laws don’t necessarily have the power to neutralize prejudice: “there are laws against racial discrimination, but racial discrimination still exists.” He also pointed out that “prejudice doesn’t operate in a rational way.” A person who is found to be at risk for a particular disease could conceivably face various forms of social exclusion, in the workplace for example. These forms of social exclusion would not be subject to legal controls.
David Haussler:
Haussler replied by making the case that concerns over privacy have to be balanced with the “enormous medical value” and potential benefits to society of basic research on the human genome. He agreed with John Brown Childs that genetic discrimination is a concern, but suggested that this is not a “new issue.” Given that people are already discriminated against on the basis of appearance, prejudice and discrimination are social problems that have to be addressed, regardless of whether new genetic information becomes available as a possible basis of discrimination.
[unidentified audience member]:
Directing her question to Maile Taualii, the audience member asked if Taualii would comment on the consequences of not participating in the research process for communities, given that a large amount of funding goes into this kind of research. Do communities have to choose between participating on someone else’s terms or being left behind?
Maile Taualii:
Taualii agreed that there is a serious concern with being left behind and that this is a concern that indigenous people face because they are small populations, which are often “invisible” in the political process. She argued that there should be a “special effort” to include small populations, but that this requires having more people who are accountable to these communities in universities and research institutions—people who are trained as scientists, but also have an intimate awareness of the repercussions of scientific and medical research for underrepresented populations.
Responding to another question from the audience about what some of these repercussions might be, Taualii talked about the degree to which native communities are struggling economically. These small populations might be of interest to researchers for a variety of reasons, but how much of this research is actually going to address the basic concerns of the community?
David Haussler:
“What about diabetes?”
Maile Taualii:
Taualii responded to Haussler by referring to the particular situation of native Hawaiians. People in the native Hawaiian community already believe that it is inevitable that they are going to get diabetes: “It’s not about if you get diabetes, it’s when you get diabetes.” Telling them that they are genetically predisposed to the disease would only reinforce the sense of hopelessness that a lot of native people already have: “Why eat healthy? Why exercise? Why do any of that?” if you think you are “just gonna die at 46” anyway. From a public health perspective, we already know what environmental factors are contributing to the high incidence of diabetes among native Hawaiians, so why do we need the research on genetics?
David Haussler:
Haussler responded by arguing that more research on the genetic determinants of diabetes would eventually lead to more effective medications and protocols to treat diabetes, even though these treatments would not be available right away.
Robert Cook-Deegan:
Cook-Deegan tried to reframe this debate between Taualii and Haussler within a broader social justice framework. He made the point that the politics of funding for research in genomics is analogous any other political process, in that the people who are represented in the decision-making process are the people who are going to have their interests represented in the outcome. On the one hand, there is a question of whether the technologies (i.e., DNA sequencing, genotyping, pharmaceutical development) are relevant for addressing the social problem (e.g., diabetes). On the other hand, there is a question of how we decide what problems matter most to us, what kind of research is most important to fund, and ultimately who gets to make that decision. Finally, there is a question of how the fruits of that research are going to be distributed, which is inevitably going to be unfair if the reality of social injustice is not addressed in the research process.
Kaushik Sunderrajan:
Sunderrajan commented on his observation that each of the speakers (excepting Cook-Deegan) naturalized a certain way of thinking about justice.
First, he observed that Caitlin Deck had naturalized “the relationship between respect for persons and informed consent.” As a counterpoint to this naturalization, Sunderrajan discussed the standards for informed consent now being mandated by the state in India, which may actually serve to legitimate the exploitative use of Indians as experimental subjects in clinical trials. Directing a question to Deck, he asked, “if you were not in Santa Cruz, but say a government official in Delhi, and your choice was between having a no informed consent situation and a situation where each better law that you made made it easier for an Indian subject to be experimented on, then what would you do?”
Second, he observed that David Haussler had equated “health” with “healthcare,” thus naturalizing the assumption that the priority should be placed on gathering knowledge that would allow for accurate diagnosis and appropriate treatment of pathological conditions.
Finally, he observed that Maile Taualii had naturalized a form of identity politics by framing the question of justice in terms of what it means for indigenous people, rather than articulating her argument in larger structural terms that would show the connections between the experiences of injustice among a variety of populations.
Caitlin Deck [responding to Sunderrajan]:
“I guess the answer to your question is, if I was put into that position, I think I would resign. It seems absolutely a horrible position to be in, and since you’re basically giving a death sentence either way, you’re using a population as a group of guinea pigs because it some ways they have no other choice or resources, or you’re using them as a group of guinea pigs because they don’t know that they’re being used.”
Robert Cook-Deegan [responding to Sunderrajan’s question to Deck]:
There is a set of tools for dealing with the problem that you pose that takes the form of ethical norms. Those norms, in turn, have begun to emerge as rules that say, in effect, “when you’re doing clinical trials, clinical trials are unethical if they are going to be done in a population that cannot benefit and will not have access to the results that emerge from that research.” Those rules are beginning to be embedded in international law, through the International Conference on Harmonization, through its rules on good research practice for demonstrating efficacy of new drugs. If you pass a law that says “you can’t do that unless it will benefit those participating in research,” then you put companies in a position of choosing. If they do a clinical trial in a population, they have to plan for how that population will to benefit from the trial. You are therefore pulling social justice into the process of ethical review.
[See, for instance, the Council for International Organizations of Medical Sciences Guidelines picked up by the International Conference on Harmonization, which is in turn incorporated into data submission rules of the FDA and its equivalent regulatory bodies in Europe and Japan via a three-way agreement. See also the National Bioethics Advisory Committee report entitled, Ethical and Policy Issues in International Research: Clinical Trials in Developing Countries. Finally, the Stanford White Paper contains "Nine Points Points to Consider in Licensing University Technology."]
Maile Taualii [responding to Sunderrajan’s comment to Haussler]:
“I want to explain that health for our people as indigenous people means health in a very broad perspective. That’s the beauty of doing public health is you can talk about sovereignty, you can talk about land, you can talk about traditional diet… that maybe the solution for diabetes for my people may not necessarily be genomically-based; it might genetically be based… There have been many studies done in Hawaii—very scientifically rigorous—that have put native Hawaiians on a diet that allows them access—good access—to Hawaiian traditional foods. And we see people go off of insulin… Whether or not there’s some genetic connection between the plant and the person that allows for that healthy eating and the correction of all the things that have gone wrong in our bodies, or if it’s the spiritual connection to know that you’re finally engaged in that process of growing food that feeds not only your spirit and your culture but your entire livelihood as a native Hawaiian because of the work it takes to grow the food and that exercise to harvest it. You know—there’s not—it’s not one piece that would solve it, but all the things combined. I think it would engage our people in a way that might be a little bit healthier than putting them on medication or altering the genome because it’s not just fixing the medical problem. It’s fixing the spiritual, social justice issue, which is the fact that golf courses shouldn’t be classified as agricultural lots and that people should have access to traditional foods because traditional foods are culturally tied to our communities. They’re not just food that’s good and tasty and comforting; it’s food that links us to our parents and our multiple generations and we have to have access to some of these things if we want to address our spiritual cleansing.”
