Property Panel Rapporteur Report, Version A
Genomics and Justice Session 2: PROPERTY
05/18/07: 11:00am-12:45pm
Rapporteur Report prepared by Natalie Purcell (UCSC Sociology)
Moderator:
Kaushik Sunderrajan, Assistant Professor, Anthropology, UC Irvine
Speakers:
Cori Hayden, Assistant Professor, Social Cultural Anthropology, UC Berkeley
Robert Cook-Deegan, Director, IGSP Center for Genome Ethics, Law, and Policy, Duke University
Maile Taualii, Associate Director, Urban Indian Health Institute, Seattle Indian Health Board
Kaushik Sunderrajan:
Sunderrajan introduces Cori Hayden.
Cori Hayden:
Hayden notes that standard critiques of privatization and “propertization” are yielding to suggestions that property can be used oppositionally in an effort to secure and protect rights. Her talk will interrogate the ways in which the notion of the public domain has become a critique of exclusionary privatization. Many recent initiatives working in the area of genomics are advocating the expansion of a “biological commons”. This “copy-left” movement advocates the farming out of innovations based on the belief that “we can and should foster innovation” by “doing innovation in public” and “keeping things accessible”. This notion of the public domain is based on the creation of a “protected pool” that companies cannot make private and cannot restrict access to. Public domain advocacy is thus a move to secure a commons against illicit appropriation and against violations of property rights. The language of public-domain advocates is often explicitly anti-communistic: commons movements are about making information widely available but under new property rules. Thus, they seek to “re-define a space of licit copying” as opposed to and against illicit copying.
Hayden attempts to illustrate the meaning of the public domain for genomics by drawing on the parallel use of the public domain in campaigns to improve access to medications. Here, access and equity are defined in binary terms: patented drug versus generic drug. The generic drug is deemed a licit copy of the original, protected within the public domain. This patented/generic binary turns the public domain into something residual (that is, left over or un-patented) and simultaneously total (in that the public-domain generic is the only licit alternative to the patented). Hayden turns to Argentina (where intellectual property laws do not control pharmaceutical production) in an effort to illustrate the presumptions inherent in the patented/generic binary and in the residual/total public domain: “What is a generic drug in the absence of a patent regime?” Hayden answers that this is a “definitional impossibility”: “You need the patent to have the generic… You need the enforced property regime to have something called the public domain.” Hayden wonders whether it is possible to develop a notion of the public domain beyond the residual/total definition that subsumes the public domain within a property regime.
Hayden notes that, although prices tend to reduce when generic drugs become available, the existence of generics does not simply open up access. It also closes down and disciplines other possibilities. The generic is thus a disciplinary category; it delimits the only sanctionable copy, demands compliance, and shuts down other proliferations. Thus, “the generic seems poised to arrive not against the patent but in a neatly bundled packet with it.” For that reason, although Hayden wants to believe in and support the public domain, she also envisions the generic as a colonizing force: “The public domain only extends as far as property rights do.” Moreover, the public domain risks fetishizing innovation by declaring the “copy” as that which is opposed to innovation. Hayden ends with a plea to resist the re-naturalization of the language of property in discussions of the public domain.
Kaushik Sunderrajan:
Sunderrajan asks that we “complicate” things further by pointing out that it can be crucial to work within “untenable” binaries like public/private. He then introduces Robert Cook-Deegan.
Robert Cook-Deegan:
Genomics is generally viewed within a technological framework as some sort of “whiz bang high-tech biology.” The term bio-technology has practical connotations; it is intimately tied to pharmaceutical applications and, in general, money-making. Bio-technology is thus closely related to economic development as well as to health. This is where patents come: they are an “instrumental right” designed to create incentives for innovation and thereby to foster progress in science and medicine. Generally, property rights are seen as the only way to spur innovation. In this framework, justice and the fair distribution of goods and services can be only subsidiary or, perhaps, subsequent concerns: “innovate now, distribute later”. There are obvious problems with this framework. Markets alone drive the production of goods and services, but markets do not, in themselves, solve problems of distributive justice. Moreover, when justice is not part of the production framework from the start, it cannot simply be brought in later as an add-on. Today, distributive justices concerns do not often inform the establishment of research agendas and protocols. This is what Cook-Deegan and the IGSP Center wish to change.
For Cook-Deegan, the public domain can be viewed as a challenge to the existing market logic of innovation and production. The public domain accomplishes things that the private sector will never do. It generates and makes available information that is useful even in the absence of a market. For example, pubic domain information enabled epidemiological research to illustrate in a public forum the dangers of smoking, thereby spurring social interventions. The public domain provides information for social change, while the market alone provides only “useful” knowledge for the production of products, drugs, and devices. The development of penicillin provides yet another example of a successful innovation within the public domain. Here, government-sponsorship worked in collaboration with the private sector to create a more affordable and more accessible drug. Examples like these illustrate that patenting is not the only solution to the innovation problem.
The public domain is not opposed to privatization, nor does it have to operate within the binary framework that Hayden described. Instead, the public domain is about setting up incentive structures that do not stop other uses of information. In practice, there are many collaborative and intermediate options between and beyond the binaries poles of the secret-patent model and the open-science model. For instance, the private sector has always drawn on public domain information, including the findings of publically-funded research, in order to develop the innovations that they might then patent. There is a complex relationship between public and private, and we don’t know what the “optimum balance” is.
Kaushik Sunderrajan:
What is at stake when we speak of property may be different depending on the substance in question. These differences demand that we look into the relationship between property and ethics. Sunderrajan introduces Maile Taualii.
Maile Taualii: <begins with song/chant>
In discussing the genomic property concerns of indigenous communities, Taualii fist wants to problematize binaries like public/private, individual/community, rational/irrational, and even right/wrong. Native Hawaiians speak in terms of balance and community. Each individual is connected to his/her ancestors and is linked in body to other generations. The collective (past and current) is present in the individual, and every “individual” decision must involve all of these community/ancestral presences. In Hawaiian, the word for knowledge comes from “gut” as opposed to head: the gut drive may provide better guidance than the mind. In challenging problematic binaries, Taualii is not trying to make a case against scientific advance or against public access to genetic information. She is simply urging examination of the consequences of these advances and recognition that “powerless” communities like indigenous Hawaiians must protect themselves.
When it comes to genomics, Taualii is concerned about its implications for the defining of identity. On the positive side, the possibilities generated by genomic knowledge could promote inclusion and might help in increasing access to medical/scientific opportunities. Genetic information may also reinforce, affirm, and strengthen native community beliefs and cultural values. On the other hand, it could act to unravel cultural beliefs and create division. If genetic determinism produces a sense of “disease inevitability” and hopelessness, it could “diminish wellness efforts”. Finally, there are many ways that involvement in genomic research might limit access to the community or circumscribe identity for some members. Taualii is concerned about scientists and others telling her people, “you are not who you say you are or think you are.”
In a sense, these colonizing gestures are present even in the language of activists working to “empower” under-represented minorities. The discourse of “engaging” and “empowering” is troubling, and these are red-flag words for Taualii. They imply that something is being given to the community from the outside—something they don’t already have or cannot generate internally. Against the language of “engagement” and “empowerment”, Taualii recommends emphasizing the power that comes from within and using words (and practices) like “community-led” and “community-controlled”.
Turning specifically to the issue of property, Taualii describes the land as a living entity: it belongs to no one. Property and ownership have terrible legacies for native Hawaiians and they represent the language/concepts/rationale that allowed the US to rob Hawaiians of their land and their sovereignty in the first place. Moreover, barriers to land/home ownership remain in place for indigenous peoples. Is it any wonder that native peoples are suspicious when it comes to property and information ownership? And what does ownership mean when the individual and the community are inseparable? What does consent mean when the decisions of the individual affect the whole community?
Bringing justice into the discussion about genomics and property entails community-led efforts that bridge traditions and cultures. In this respect, the Urban Indian Health Initative can serve as a prototype. It is an organization formed of and controlled by community members, many of whom have the training and information necessary to act as their own organizers and advocates. This initiative is based on a respect for cultural and historical values, embodied in the affirmation: “I can address my own health issues because I know my own history.”
Discussion:
Shannon Williams:
What is involved in defining the public good? What does public mean when your way of knowing encompasses multiple generations?
Maile Taualii:
Indigendous concerns about the public good relate to how genetic sequencing is going to actually help the members of the community and how public access to this information can benefit the community.
Dave Bernick:
Those involved in genomic science are interested in Hawaiians not as a specific, singled-out group, but rather insofar as they represent one dimension of the diversity of the human population as a whole. Knowing about Hawaiians and other groups can help illustrate the range of the possible for humans.
Joon-Ho Yu:
Representing the diversity of the human population has “technical benefits” in the science of genetics.
Maile Taualii:
Yes, it’s important, but at what stakes? It’s important to weigh the costs and the benefits. Can we engage in a way that’s balanced and considers both sides?
Eben Kirksie:
When we talk about the “public good” served by science, we can see the possibility that genomics has a “salvational narrative” built into it.
Cori Hayden:
When we talk about “publics”, we need to be very specific about what publics and what communities we are invoking. When we use the “public good” to refer to the good of humanity, we are using a very diffuse notion that you can hardly wrap your head around that that might shut down certain questions. The “public good” is also often discussed in a national sense, and here post-colonial critique can help us to interrogate its meaning: who is included and excluded in this public, and what histories are implicated in the discussion of the public good?
Jenny Reardon:
“We need to historicize and specify the meanings of the terms we’re using.” Cori and Bob are referring to different things when they say “public”. We need to break the language out of its naturalistic connotations and be explicit. [To Maile:] What’s lacking in the current practice of genomics? What might it take to make it safe for your community?
Maile Taualii:
There are “so many issues of trust” that extend beyond genomics to the relationship that indigenous communities have to society at large. Trust-building takes a long time, and it must be tied to wider issues of social justice. Since no one else is looking out for “us”, we need to think first about the protection of our community. When it comes to genetics, self-regulation [by scientists?] is not sufficient. In making laws and regulations related to genomics, we must adopt non-discrimination policies, but we also have to go further. For instance, we could include non-harm clauses and access clauses. The legislation should be more protective and more welcoming. The protection of the most disadvantaged means the protection of everyone.
Donna Haraway:
We need to look at the story-telling practices at work in the constructions we’re employing, such as the construction of humanity as a species. Story-telling practices are not mere opinion but are very powerful ways of being in the world. Biology in particular exhibits a deep resistance to recognizing itself as a story-telling practice, and therefore a truth-telling practice. Biologists need to start talking about this and owning up to their story-telling practices non-relativistically. We should look at the genome project as a story-telling project. Those invested in it have deep intellectual and personal stakes in the genome. In these story-telling practices and structures of desire, the “materialization of who we are” is at stake. This is “a plea for thinking better about this.”
Maile Taualii:
We know our stories are true. They are not just myths. They tell the truth.
Donna Haraway:
Yes, but that’s “too easy.” The question is “what kind of truth?” What happens when different kinds of truth “clang” into each other?
Maile Taualii:
They don’t clang. We’re not trying to prove others wrong.
Donna Haraway:
There’s a sense in which that’s not true. There are conflicts in which we can’t just say there are “multiple truths” because some truths don’t sit well with each other. For instance, when we are dealing with different community-membership criteria and conflicts over the process of determining membership, truths can clash.
David Bernick:
[To Maile:] How would your community use genetic information? Would you use it in determining membership criteria?
Maile Taualii:
We already have ways of knowing who is a member of the community. Genetic information might be useful for health improvements. It might have practical uses, which now seem really far off.
John Brown Childs:
Much of the discussion here is coming back to the old conflict between multiplicity and oneness. Perhaps there is a way to balance unity and respect for diversity (for instance, instead of talking about “one people, one struggle, one love” in our discussions of multiculturalism, we can speak of “many people, many struggles, one love”).
Deborah Gordon:
There are clearly ethical implications in raising questions that could affect people’s identities and how they define their communities. But do we sometimes overestimate or misunderstand the impact of this? In the Italian Hap-Map project, the members of the community involved felt no threat from the project. They already knew who they were and how their community was defined. They did not think this was at all threatened by our work.
[unidentified audience member]:
Are there any successful examples in the field where distributive justice concerns were taken into consideration from the start and communities were included in the whole process? Also, in this discussion, we should consider the leverage that communities have over even large companies; the power isn’t one-directional.
Kaushik Sunderrajan:
There are many dispossessed communities, but they are dispossessed in different ways. The locus of their identity may have nothing to do with genetics at all. What are the possibilities for shared organizing when there are very different epistemic stakes and histories?
Robert Cook-Deegan:
In terms of successful examples of incorporating justice concerns from the start, there are new research and policy principles that can contribute to this. For instance, you should not be allowed to do research on a population that will not benefit from that research. Also, we can establish licensing provisions that improve benefit distributions.
[For a set of principles and protocols, see the Council for International Organizations of Medical Sciences Guidelines. 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."]
Cori Hayden:
We should pay attention to what kinds of politics of distribution and access are on the table and off the table to being with.
Maile Taualii:
With respect to processes that incorporate justice, our community relies on consensus. We have a formal process for consensus-building. It takes a long time and there is room for dissent. We have mechanisms for making collaborative community work happen.
