October 17th, 2011 at 12:49 am edit
While reading Chapter 5 of Jenny Reardon’s Race to the Finish: Identity and Governance in an Age of Genomics, I was particularly intrigued by the debates over representation and informed consent/ choice. There are multiple senses of representation at work here that I’d like to draw out and perhaps we can have further discussion about them in class. The first sense of representation is reminiscent of the Latour piece we read in the spring, in which he critiques the view of science as “merely” recording the ontological reality of the world. This appears in the contentious group consent section of the Model Ethical Protocol, when scientists assume that groups exist in the world and that all they need do is identify these groups and represent them in a different form (a genomic map). Reardon points out that in fact the definition of a group can actually prove rather difficult and that the sampling criteria built into the Diversity Project actually projects a means of identifying groups that may not account for the local forms of self-identification, alliances, and salient differences (2005: 121). While the identification and representation of groups is certainly a way that the scientists’ assumptions are built into their research design, I also wonder about the politics of the map form itself. When researchers draw blood and then use it to create maps of genomes, what kinds of assumptions, values, and judgement calls are built into the map itself? What kind of self is a genomic self and what do scientists imagine it to mean? I think of Sarah Wagner’s book on the DNA identification technologies used to identify the bodies of victims from the Srebrenica massacre. In the process of identifying bodies, families of the missing donated their blood and were interviewed for any kind of information that might help with the identification process (i.e. Clothing the person was wearing when last seen, personal items the person might have had in their pockets, physical characteristics, past injuries etc.). While scientists emphasized the individuality of DNA, the identification of remains was often not possible without the narratives of family and friends or the DNA markers that demonstrated kinship. Blood can therefore be individual or social. What does it mean though to represent an individual or a group through these bio-socio-epistemological genomes? Does it give primacy to particular kinds of identities over others? Does it promote the authority of scientific means of identification over other forms?
Another form of representation is that of a person or group speaking for others. Representation in this case seems to be somewhat paradoxical. For example, Reardon refers to the right for Native Americans to define their own members. Note that it is only federally recognized groups of Native Americans who get to define their means of membership. The paradox lies in the fact that the state must first recognize a group of Native Americans who then get to decide what constitutes their group. So, who gets to represent the tribe and determine the boundaries of inclusion? How does the state “recognize?” Further, in the case that some indigenous groups may want to participate in the diversity project, are some of these international organizations that “represent” potentially paternalistic?
October 17th, 2011 at 10:20 am edit
In addition to appreciating the narrative style of this chapter, I am struck by the resonance between the problems Reardon analyzes and conversations I’ve had in a very different activist context. In fact I found myself having to reread several parts to get myself to think about methodology; anger kept steering me away from being able to appreciate the formal aspects of the piece. What I kept coming back to was the feeling that the Diversity Project actors being analyzed here are not just being asymmetrical or unfair, they are struggling to create the terms of a relationship in which consent is not possible. I am reminded of consent zines I read, analyzed, critiqued, and helped distribute when working with an informal group organizing around radical responses to intimate partner violence in southern Indiana. Our group grew out of a local decarceration movement catalyzed by a local attempt at prison expansion. One really basic principle articulated in most of these zines is that consent does not exist without the option to refuse. Persuasion and consent are incompatible. So much of what the Diversity Project appears to be doing during the period Reardon analyzes is coming up with rosy forms of persuasion, rather than fully, actually taking on a relation of consent. It is clear that indigenous refusal to participate is understood as a problem, and a problem to overcome. Referring back to the consent zines, in order to develop a functional consent relationship there must be full validation of refusal (“no” is ok), and anyone seeking consensual agreement has to be able to recognize a variety of ways “no” might be communicated – or “yes” not communicated. One seeking consent must be sensitive to their own impulses, including the impulse to persuade, as an indication of what is happening in their consent process. DP organizers start, however, from viewing their entanglement with indigenous peoples as already a “good opportunity to obtain” data (quoted on 102). The portion of Greely’s letter crossing 106 and 107, for another example, sounds a lot like, “Honey, I’ll make sure you like it. (…I’ll make you like it…) It’ll be good for you.” Finally, radical intimate partner consent process can also shed light on the conflictual dynamics around the existence of groups, how they’re defined, by whom, and for what purposes. Much as the relationship positions formed through possessive markers can be used to constitute a person as being in a position characterized by agreement rather than being in a position to which agreement is available (“But you’re my boyfriend,” “But you’re my wife”), the Diversity project was working to configure a relationship in which indigenous peoples’ position would be constituted as of agreement. The response presumed appropriate is agreement. Phrased another way, the DP NAmC sought to (re)constitute their own domain as extending to include indigenous people’s agreement to sampling through the processes they devised for group consent. Returning to the matter of interview methodology, I appreciate how Reardon lays out enough of the conversation for me to come, in a couple of places, to a slightly different view of NAmC from her fairly diplomatic one. About several of the Diversity Project positions articulated I kept wondering, Why shouldn’t they be working to advance their own agenda? Calling their struggle self-serving requires a fantastic capacity for irony; this kind of rights activism (critiques of the rights framework notwithstanding) is born of a dire need to self-serve.
Some examples of the zines I reference above:
and a list of links to resources on various aspects of consent and intimate partner violence by the group that inspired our work in Bloomington:
and their partner organization:
October 17th, 2011 at 1:24 pm edit
It was really nice to see how Jenny used her interviews in Race to the Finish. Derek and I are hopefully going to be collecting a lot of information using this method, and this reading is making me think about groups in the context of interviewing. How do Derek and I want to classify our different groups of interview subjects? What voices do we want to include, and how will our classifications affect the information that we gather and the greenhouse design process? Jenny seems to break down her interviewees into the following groups:
Representatives from sample groups
Govt. advisory panels
Scientists not involved with the project.
I’d be curious to listen to Jenny talk about how grouping her interviewees in this way might have shaped some of her ideas. Just throwing some ideas out there maybe Derek and I want to expand our interview pool to include more than just Santa Cruz County farmers. Engineers, produce vendors, agricultural non-profits, ecologists, might bring depth and new perspectives to the design process.
Kathleen Uzilov Says:
October 17th, 2011 at 2:46 pm edit
Sometimes, while reading Jenny’s book, I catch myself feeling like such a scientist. The other responders so far have made excellent points, and after reading their perspectives I find myself in agreement. I see how shortsighted the organizers of the Diversity Project were in some ways. But when I read the book, shortcomings to the Project’s design are not necessarily immediately apparent to me until Jenny reveals and explains them. What I mean is that I can easily understand how the scientists fell into the problems they did; I empathize with how they believed they were performing a good act, that their research had good intentions that they believed would win out and resolve any ethical questions that arose. And I wonder more acutely about research I have been involved in over the years – what potential issues did I similarly not see?
Understanding these complications comes more quickly to me now than it did at the beginning of last quarter’s class. In my experience at least, scientists just aren’t usually trained to be able to see or deal deeply with these issues. Its like Jenny mentions in the book, when the Diversity Project scientists ran into criticisms, they “looked to the norms and practices of Western biomedical ethics to stabilize their Project” (p. 124). They turned to the tools in their toolbox, and didn’t find ones capable of fully understanding or working through the situation and coming up with effective solutions. It seems to me that scientists in general need to become more personally responsible (rather than assuming it can be passed along to a collaborating anthropologist or some such) for ethical issues in their own research, and this will only happen when the training provided to scientists expands to fundamentally include ethical training and consideration of the kinds of ideas and questions we have been examining in Science and Justice. Some programs have begun to address this, but it seems like an area that definitely needs more attention. Perhaps this is preaching to the choir to bring this up here, but it is something that has been on my mind lately and that this reading further enforced for me.
Derek Padilla Says:
October 17th, 2011 at 5:39 pm edit
After reading Chapter 5, I found myself asking whether there were any changes the HGDP could have made to remedy the divide between themselves and the native cultures who felt they were under attack. It seems the project was flawed not just from the start, but by its very nature as a research endeavor.
Greely’s actions were an interesting look at what one would do when faced with strong opposition to a project you undoubtedly have invested much time and effort into, and many people’s (whom you perhaps know personally) livelihoods rely on. But the project depends on a resource which you have no control over and the people who do have control are staunchly opposed to your work.
I was about to write “It seems the ethical thing to do would be to not carry out the research,” but I hesitate to take it that far. (Perhaps the fact that I didn’t is in and of itself a problem.) The scientists’ values clearly align with carrying out the research, but those of the ones who are being studied clearly do not. The scientists try to develop “ethical” justifications and end up falling into their own value systems for what is ethical. “[T]he reason to do the ethics right was not to address the legitimate concerns of subjects, but rather to protect the Project from unwarranted criticism that could harm its future,” (p102). This quote, for me, sums up the ethical efforts of the scientists and seems to be a theme underscoring most efforts to achieve ethical research in western science.
Again, I ask, is there anything that could have been changed to carry out this research in a way deemed satisfactory by both parties?
October 17th, 2011 at 6:37 pm edit
The issues of ethics in science brought up in Reardon’s Race to the Finish resonated with me because some of the discomforts I’ve been having with my project. The proposed marine protected area (MPA) that the project I’m involved with is supposed to inform will be put into place by the Environmental Justice Foundation (EJF), with perhaps some support from the (often corrupt and ineffectual) government. The area will most likely have some restrictions on the gear used by local fishermen (for example, further restrictions on net mesh size), and hopefully reduce illegal fishing by foreign fishing vessels in the area. Though the head of the project has visited the area and has been successful in soliciting collaboration with local fishermen (who have been very generous with their time and information), it’s hard not to feel uncomfortable with such a scheme being largely designed and implemented by people from outside the community. This undertaking could potentially have far-reaching impacts on people who depend on the fishery for their livelihoods and food security, yet the people with the most to lose aren’t in positions of power within the project. Instead, the London-based EJF (who are non-scientists), my collaborator and I, and the SL government will likely have much more influence than those most involved in the fishery. Yet with many stocks likely overexploited and illegal fishing robbing the country of $29 million per year, an MPA has the potential to be (I think) beneficial in tangible ways. It’s difficult to reconcile my discomfort with the asymmetries of power and influence in the project with the feeling that my work could be useful in a place where the business-as-usual scenario isn’t sustainable for the fishery.
Reardon’s discussion of the difficulty in defining groups and the rights of people belonging to groups also pertains to a related fishery issue I’ve been thinking about, which is rights-based management. Under such management schemes, groups of people are allocated dedicated privileges to harvest certain stocks, or exclusive rights to fish in certain areas, with the hope that it will lead to better long-term stewardship of populations and ecosystems. Such privileges are often given to those who are considered to have some historical claim on the fishery. Some of these systems have been successful in increasing revenue while maintaining healthier stocks, yet the question of who gets to belong to such groups and why rarely seems to get much attention. Similarly, the heterogeneities and asymmetries within the groups aren’t commonly recognized as important factors.
Also, after reading the responses already posted, I’d like to second Derek’s question of what could have been changed to make the HGDP workable for both/all parties, and ask (following from Kathleen’s post) how we can move towards making ethics a more important part of scientific education.
October 17th, 2011 at 10:38 pm edit
People have already raised important points. Rather than merely repeat them, I think I would just suggest one other, more general avenue for discussion. What kind of data do we create when we do an interview? There are a number of directions that this question can take. One is to consider the ways in which the context and questions of the interview prefigure the data in certain ways: For example, how dissociated are the interviewee’s ideas/responses from the interviewer’s ideas/questions? How do we account for the modes of question posing (e.g., raised eyebrows, intonation, accent) merely through an interview transcript? That is, how do we represent the dialogic interview? All data are context-specific, of course, but how do we assess (and later assert as representative or valuable) data that are produced sometimes in very circumspect circumstances (e.g., over the period of a single hour, in a hot room, or at a windy picnic table)? Perhaps we could document this through situational mapping?
Another way to approach the question of what kind of data these interviews constitute is to ask: What does this stuff add up to? Picking out phrases that usefully/conveniently articulate a point the analyst is trying to make is one easy way – probably the most common way. But how do we compare and contrast interview material? In short, how do we assess its ability to represent more than one person? Here I’m talking not just in terms of the politics of representation (such as emerges in the question of group consent), but the (related) “emprics of representation” if I can make up that word – the ability for one datum to represent another datum.
October 18th, 2011 at 2:00 am edit
Unpacking the Diversity Project debates around group consent, Reardon writes, “…those deemed ethical experts proved no more able to construct a stable moral order than those deemed scientific and cultural experts proved able to make definitive claims about natural order. These expert-based approaches faltered as questions about moral order proved inseparable from questions about the order of nature and the constitution of power.” (124) Naming, grouping, and classifying are ways we all come to know and act in the world. Becoming “expert” at these seems to be the primary goal of our personal investments in years of education and training. To put it crudely, it takes experts to point out and challenge historical constitutions and contingenies of the “rule of experts”. So within the context of Science & Justice, how might we redefine “expert”? How do we account for the differences, disjunctures, antagonisms, omissions that these processes of becoming necessarily instantiate? While avoiding paralysis — as Colin pointed out in the past?
A related question: In learning to render visible multiplicities and instabilities — from a position that is always and already partial and mediated — how might we learn to reconstitute a common call for justice? Where might “it” (a collectivity in the making) derive its power, or at least enough of a draw to bring about change that matters?