Property Panel Rapporteur Report, Version B

Genomics and Justice Session 2: PROPERTY

05/18/07

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

Cori Hayden:

Cori Hayden discusses the negotiation of private and public spheres in the context of pharmaco-genomic cultural topographies. She discusses the deployment of public domain mechanisms and of creative commons mechanisms. Hayden poses the question: Against what do we need to secure an expanding commons of new biologicals? Hayden shows how certain rhetorics committed to “securing” the public domain can in practice function as “colonizing constructions” because taxonomies of the public domain are deeply intertwined with the private domain. There is a range of ambiguity and creativity between the dichotomous poles of public and private. Hayden is concerned not only with the relationship between the Big Patent and the generic, but also the more ambiguous and ironic relationship between the generic and the illicit.

Hayden discusses a renewed commitment to inventiveness at the expense of the illicit copy and how this enables the generic to function as a colonizing exclusionary force. The categorical inclusion of “the generic” does not only or always open up access; it also closes down and disciplines the proliferation of certain kinds of things. In Mexico, the generic arrives into a context within which there is a massive taxonomy for copied drugs, and so there is a massive unruliness in terms of the taxonomic universe of copied drugs. The generic comes in literally to discipline and winnow out all of that “excess” proliferation and to occupy the exclusive space of the legitimate copy; e.g. “all copies are not created equally” in the land of the non-patented. The production of “the generic” ironically excludes all other illicit copies of drugs, contributing to a disciplining of innovation and access, as opposed to a liberation of these public goods. Some predict that the exclusive dichotomy of the patented/generic will eventually structure the “pirate saturated” pharmaceutical industry of Argentina. Hayden discusses the (re)emergence of an expansionary narrative similar to the one previously associated with privatization—one which facilitates exclusion through the language of securing public goods against that categorized as the illegitimate Other.

Hayden discusses how many of languages about the public domain tend not only to set themselves against the specter of private property, but also to redefine a space of licit copying that takes its meaning precisely from another set of oppositions; that is, against the figure of the illicit copy. Hayden says that, juridically speaking, you need the patent in order to have a generic; e.g., you need an enforced intellectual property regime to have something like the public domain. Hayden suggests that we think critically about the notion of the public and that we resist universalizing the public domain as simply that which is total and residual in relation to that which is outside of the patent. The latter formulation may reproduce the exclusionary effect of the patent regime that it purports to oppose. Thus Hayden argues, “the non sequitur of the generic seems poised to arrive not against the patent, but in a neatly bundled package with it.” Hayden argues that a renewed commitment to “inventiveness at the expense of the illicit” commits us to far too many oversimplified taxonomic assumptions before we have begun to think critically. Hayden makes a plea against a re-naturalization of the traditional language of intellectual property, particularly the presentation and mobilization of the normatively (mis)recognized divide between public and private.

Robert Cook-Deegan:

Cook-Deegan begins by pointing out that US legal discourse surrounding innovation and property rights has been instrumental in orientation (as opposed to moral or human-rights-oriented). To patent is not a “human right”; it is an instrumental or legal right. The public domain is not opposed to the private, but is organized around a desire to set up incentive structures that do not stop other uses of information. Cook-Deegan explains how research and distributive justice have been epistemologically segregated in intellectual property law within the context of genomics.

The problem we are dealing with is predominantly presented as an innovation problem, and patents are seen as the solution. Patents are thought to provide the incentive structure that facilitates innovation. In the discourse around patent law, the mantra is: innovate now, distribute later. Innovation is presented as an issue to be worked out through markets rather than public justice initiatives. Cook-Deegan argues that, until we take on the problem of justice from the start (as opposed to suspending it until a later phase of the innovation process), we will never be able to address the grotesque inequalities that characterize drug development and distribution. The public domain offers opportunities for development and democracy that are virtually impossible in the private sector. The information generated by public domain initiatives has a use value beyond that provided by private markets; the public domain provides a space for public goods and information that can contribute to non-market-determined social change. Employing the example of penicillin drug development, Cook-Deegan points out that public-private partnerships are possible, and private patenting is not the only solution to problems of innovation, ownership, access, and property allocation.

According to Cook-Deegan, the blockbuster model of Big Pharma is fading fast. Pharmaceutical networks are expanding, interlinking, fragmenting, and merging. In other words, the model of an open/public David as opposed to a closed/private Goliath may no longer be an accurate model for describing public and private domains. In practice, there is a diverse array of intermediary and collaborative relationships that defy the rigid traditional dichotomy of public openness versus private exclusion.

Maile Taualii:

Taualii beings by challenging the binary-centric ethical taxonomies that have dominated forum discussions thus far. Oppositions between good and bad, public and private, past and present, etc., are not as significant or meaningful in native Hawaiian culture as they are in American culture. What many western academics define as antagonistic oppositions are integrated concepts in native Hawaiian culture. There is room for difference of opinion.

Taualii offers a brief introduction to her own community (a “Hawaii 101”). Indigenous people have a historical continuity with the land with which they identify. They are nondominant peoples who are determined to preserve their ethnic identities. In Hawaii there are three picos[?]: the ancestor generation, the parent generation, and the sexual/reproductive generation. Individual decisions affect all of these dimensions. In native Hawaiian language, the word for knowledge is nakawow[?] which is derived from the term for gut. For native Hawaiians, the mind can actually get in the way of doing what’s right or wrong, or moral immoral. The gut can see and feel in ways the head cannot.

Taualii discusses how issues of identity, genealogy, material inequality, racism, and depression complicate the genomics debate vis-a-vis indigenous communities. She explains how there is a real fear that some scientific tests could damage indigenous cultural identities. Referencing Yu’s talk, Taualii problematizes the idea of “engaging” underrepresented minorities. According to Taualii, the word “engage” has connotations of externally imposed control and indigenous weakness. She says that offers of engagement and empowerment from western scientists create red flags for her and her people. Such language can represent a subjugating rhetorical move that subordinates the integrity of native peoples as self-determining communities.

Taualii describes the interplay of individual desires and the “collectively established” desires of the community. She explains that the decision to give consent for genetic research is always a community decision, and it overshadows an individual’s right to give consent. She finishes with a list of recommendations for future actions (displayed on overhead, not discussed due to lack of time).

Discussion Session:

General Themes:

o What makes populations interesting for genomic researchers?

o How does genomics create or expresses divisions among subjects, policy makers, and researchers?

o What are the advantages and risks of defining populations on a genetic basis, particularly when so many of these bases link directly to disease and undesirable biological problems?

Maile Taualii:

Is the knowledge always worth the social risk? Can’t we engage in a way that we’re all safe and understand more? We should get beyond the language of good and bad or right and wrong and use a more holistic approach to community involvement with genomic research.

Donna Haraway:

Haraway advocates the conceptualization of story-telling as a truth-telling practice. Haraway and Taualii have an exchange regarding relativism, truth, and story-telling. Haraway brings up the interesting problem of multiple non-relativistic narratives with real or legitimate truth-values that often clang with one another. Haraway asserts non-relativism as a value, but Taualii claims that the different kinds of truth stories of her people are all recognized as true, and that they do not clang. Haraway disagrees, arguing that “there’s a way in which that isn’t so”, particularly when contested claims regarding origin stories and tribal membership are at stake.

David Bernick:

How would your community use genetic information? If the knowledge were kept exclusive to your community, would it be used to establish membership criteria?

Maile Taualii:

We are not necessarily interested in using genetics to figure out who we are. We care more about practical uses of science, not exotic fact-finding missions. At present, it seems that genomic science is more about fact-finding than improving the health of the disadvantaged.

John Brown Childs:

Childs speaks about the ancient dichotomy dividing multiplicity and oneness: There’s a multiculturalist poster on campus that reads: “One people, one struggle, one love”. Perhaps a transcommunal perspective should advocate “Many people, many struggles, one love”. This reformulation expresses community connections but allows them to be balanced with high degrees of diversity.

Cori Hayden:

What is the public good? Part of what’s been expressed in this exchange is the need to be very specific about what we mean when we say public good. We use many broad references to an ambiguous human good, and this rhetorical recourse to “the good of mankind” is used to establish legitimacy. Universal notions of “the public good” can trump not only individual claims and interests, but also the claims and interest of marginalized communities. In discussing publics, we must be as specific as possible, and we should trouble the naturalized usage of terms like “the public good”. Whose public? Whose good?

Shannon Williams:

Does knowledge always represent a public good?

Jenny Reardon:

Language matters. We have many entangled meanings floating around our terminologies. For example, Hayden and Cook-Deegan are both using the term public but they are employing different definitions of public. This issue of language and meaning is a big part of the challenge we face in engaging in more productive conversations about these issues.

Unidentified Speaker:

Can someone give an example of a successful initiative that included concerns for distributive justice from the get-go?

Robert Cook-Deegan:

Unless researchers build escape clauses into their licensing structures to ensure that there’s a plan for use/distribution in the developing world, distributive justice will not happen automatically. Universities should take responsibility for ensuring that such licensing clauses are built into the innovation apparatus. There are no successes yet because the projects and programs experimenting with these principles have not yet been carried through to completion.

[For a set of principles and protocols, see the Council for International Organizations of Medical Sciences Guidelines. See also the Stanford White Paper.]

Kaushik Sunderrajan:

Sunderrajan is interested in the construction of an opposition between community and humanity. Is there a way to build solidarity amongst differently dispossessed communities?

Cori Hayden:

There is a link between the rise of philanthropy and the emergence of benefit sharing as a new ethical principle. There is new recognition that communities should not participate in genomic initiatives unless they will receive something in return. Hayden suggests thinking seriously about the following questions: What kinds of politics of allocation, distribution, and access are thinkable here in the United States? How can we avoid universalizing U.S.-specific circumstances and values?

Maile Taualii:

Trust is a major issue for us as indigenous peoples; we know that most others are not thinking about our interests. Thus, a great deal of suspicion and scrutiny precedes a trust relationship with dominant groups. Indigenous communities do not yet have reasons to trust the “good will” of genomic projects. Many indigenous people still have serious and well-warranted fears about genetic initiatives and the threats these initiatives pose to the well-being of their communities and their ethnic identities. We want people to recognize the value of including marginalized native voices at the discussion table. Indigenous peoples come to the table already disadvantaged; the relationship is always and already unfair and unequal. Yet if you include and protect the group that is the most disadvantaged, this in some sense ensures protection and fairness for all.