Presentation - Laura Foster

Presentation - Laura Foster

Genetic Information and the Common Good

Session Presentation



Laura Foster, JD, PhD
Assistant Professor of Gender Studies
University of Indiana – Bloomington

Genetic information circulates and is structured in many different ways.  It is stored within biobanks to conduct medical research and forensic databases to solve crimes. Genomic information is translated into personalized medicine and is offered direct to consumers to enhance their personal health knowledge. Genetic information is also isolated and purified into patented inventions.

I am interested in the various ways genetic information travels through these variegated technologies, while shaping and being shaped by various different norms and ethical frameworks. Notions of health, security, innovation, commodification, and control are some of the normative scripts at work. To facilitate our conversation today, I want to suggest three key words in which to think through the tensions within, between, and across these technologies. I want to begin with the terms – publics, information, and heritage. I propose these key notions merely as a starting point to generate conversation, to invite contestation, and to conjure up other key themes that may be relevant.

With a background in law and women’s studies, my own research primarily focuses on the circulation of genetic information within the context of Southern Africa. In particular, I am engaged in qualitative studies on the patenting of Indigenous peoples’ knowledge and on the practice of genetic ancestry testing in South Africa. However, it is my interest and on-going research regarding the ACLU-Myriad Genetics breast cancer gene case that I want to draw upon today as a way of interrogating what we mean by the “common good” and offering some precautions.

As a patent law scholar, I am obviously interested in the judicial arguments against patenting a product of nature. Putting aside the doctrinal however, I am also interested in the coalitional efforts behind this case as articulated in the numerous legal briefs submitted to the court. My interest in the case comes out of my own desire to find connections and disconnections between the patenting of breast cancer genes and the patenting of Indigenous peoples’ knowledge in South Africa. In particular, as a way of exploring tensions between the individual and the common good, I want to consider how, through this litigation, patent law simultaneously becomes a women’s rights issue at the same time as attention to gendered social relations becomes obscured. I also want to bring attention to how notions of a genetic commons for the public good can inadvertently reinforce violence against indigenous peoples.

Let me evoke the first of my three key terms by asking who and what are the various publics and interests at stake? It is this first term that I will focus most of my attention on today.

Centered on the metaphor of genes as information, the initial 2009 complaint argues that Myriad’s BRCA1 and BRCA2 patents restrict the flow of information regarding breast cancer research. Various publics are evoked in the complaint and in the broader coalitional efforts against the case. For instance – physicians, women with breast cancer, scientific researchers, and women’s health organizations. Explicit gendered arguments are made within the facts and impact sections of the complaint. Women are prevented from receiving genetic information regarding their susceptibility for the disease because testing can only be done through Myriad laboratories. The complaint points out that many women, particularly women of color, cannot afford the testing. It also argues that gene patents restrict information sharing among researchers, precluding them from developing alternative tests. The ACLU argues therefore that BRCAI and BRCA2 gene sequences should not be patented, and should remain freely available in the public domain for scientific research. Such arguments are also embodied in a striking image on the ACLU website. A silhouetted female figure adorned with a DNA double helix stands with her arms crossed as the tagline beside her reads “ Do Not Patent My Genes. Narratives of reproductive choice and bodily freedom become linked to arguments against the control of genetic information. The ACLU litigation and public education campaigns bring attention to and frame patent law as a women’s health issue. Genetic information in the form of BRAC1 and BRAC2 genes should not be the subject of individual property rights. They should be in the public domain and open for the common good of all to develop more meaningful genetic testing technologies so that individuals can make better health care choices. Within the bounds of the law this is an appropriate framing to make. However, I also think it cautions us against how the “commons” and the common good are being deployed. In this case, genetic information for the common good is meant to provide space and opportunity for individual health care choice, a valuable goal so long as it includes a discussion of how individual choice is constraint by structural inequalities.

I might also mention that the framing around the public domain and a “commons” obscures the particular concerns of other publics involved, in particular that of Indigenous peoples. Interestingly, an amicus brief filed by a coalition of stakeholders involving the Indigenous Peoples Council on Biocolonialism (“IPCB”) raises additional questions. Taking the indigenous peoples’ rights position into account, the brief argues against gene patenting and in favor of genetic information as the “common heritage of humanity” but cautions that appeals to the common good have historically be used to commit violence against Native peoples, thus regulatory measures in the form of informed consent, benefit sharing, and indigenous peoples’ own ethical review boards should be considered.

Emphasis on the public domain in order to make argument against the patenting of production of nature however is what is intelligent to the law. The framing of the case as a women’s health issue drops out and is not addressed within the not addressed within the initial 2010 judicial opinion, which focuses exclusively on doctrinal legal arguments regarding patent law rules and fails to consider the policy arguments around regarding the consequences for women’s health.  The lesson being that in advocacy work we are forced to make narrow arguments and the various conflicting publics we are concerned about may become obscured.

Let me briefly start to wrap up, by asking a second question, how might we address the various materialities of genetic information? The ACLU case concerns isolated and purified breast cancer genes. A biobank may concern human tissue and blood samples or even genetic seed information. Personalized medicine may involve genetic databases explicitly coded with racial and ethnic markers based on false statistical inferences. Furthermore, in the area of assisted reproductive technologies we are concerned about genetic information of embryos in making pre-natal choices. How are tensions between the individual and common good structured differently, given the variable materialities of the genetic information at issue?

Lastly, I want to ask, is the metaphor of genetic information working for us? Should the focus rather be on notions of “genetic heritage.” I find the term heritage to be a way of contesting notions of genetic information as property. I also find it valuable for considering various different genetic technologies within historical context. The patenting of genes evokes histories of colonialism and slavery and the taking of indigenous peoples’ lands, plants, and bodies. The use of genetic information within ARTs evokes histories of eugenics and contestations over reproductive freedom and abortion. Yet, I am uneasy with turning to a common genetic heritage because I worry that it might too easily slip into narratives of universality that might be used to disregard Indigenous peoples’ own claims to control their genetic information and knowledge. What violence might we inadvertently commit by framing genetic information as a common good, just as Indigenous peoples’ are making claims to control their own genetic plant and bodily information?

With that I end with the task of rebuilding genetic kinship relationships that move away from binaries of information versus the common good and imagine relationships between physicians, patients, and indigenous peoples that is found on values of sharing, family, respect, and connection.