Presentation - Laura Foster

Presentation - Laura Foster
Closing Plenary

Genetic Information: Rights and Responsibilities

Track Summary

 

 

Laura Foster, JD, PhD

Assistant Professor of Gender Studies

University of Indiana – Bloomington

 

 

The genetic information track is an emerging track at an earlier stage of inception. We are still dialoguing and struggling through ideas, thus it has less cohesion than some of the other tracks, but that very lack of definition may be its greatest asset. Many of those in attendance were working to influence policy and legislation, while others contributed their academic sensibilities to push back on definitions and language. We had a daunting task, to interrogate the rights and responsibilities concerning genetic information and to question the polarity of individualism and the common good. This guiding objective forced us to consider how genetic information circulates in different ways across a range of technologies. It also made visible the potential of this group as a space to generate connectivity across technologies and social justice concerns in order to translate them into policy. In that sense, maybe genetic governance is a more appropriate name for this track.

 

In terms of what we addressed, I saw a productive dialogue around the tensions between genetic data, information, and its generative knowledge claims.

 

We addressed the materiality of genetic data itself and asked what specific genetic data and materials are at issue in various technologies? For instance, we spoke about people sending salvia samples to a lab through direct to consumer testing. About DNA evidence for forensic databases. About patented breast cancer genes used to develop breast cancer testing. And about human tissue samples obtained from human research subjects, which are then used for secondary purposes.

 

We also struggled with how genetic data is or is not being translated into useful information. Who is using the genetic information? What does genetic data really tell us? Does it provide the most useful information about our health? How is it limited? Is genetic information the best tool for solving crimes? Is genetic information personal or is it a common good? In both sessions there was discussion about getting the public to move away from the paradigm that more genetic data and information is better.

 

Another key theme centered on how genetic information is being used and applied to make knowledge claims about bodies and identities that reinforce a biogenetic determinism. How do we develop governance structures that work to disrupt notions of genetic determinism? What language can we use that creates a sense of urgency around genetic information and builds the type of relationships we want to facilitate?

 

In sorting through these questions, we were offered one hopeful model of an ongoing informed consent process, whereby researchers are going back to their human research subjects and creating more long-term relationships by asking their permission to use their genetic information for secondary purposes. This generated a discussion of the tensions between the rights of individual human research subjects versus the need for biomedical research for the common good. We also questioned why practices of informed consent are being emphasized, and asked if there are other models we can rely on.

 

At its conclusion, our session began to question the language and metaphor of genetic information itself. How does the notion of “information” limit our discussions, public educational campaigns, and advocacy?

 

So where do we go from here? I believe that the genetic information track provides a forum to discuss more broadly the values and norms across a variety of genetic technologies and how to translate this work into more meaningful governance structures. This is where a discussion of core biopolitical values can take place and a more positive vision of genomics can emerge. It might also provide a space to safeguard against the inadvertent creation of knowledge silos. For instance, interrogating genetic information across technologies and translating it into policy initiatives means that we must address how personalize medicine in its current form often relies on racial and ethnic markers and how genetic information takes on different meanings when it relates to ARTs. Furthermore, what can we learn from struggles over genetic information within different global contexts and indigenous peoples’ social movements embodied in the Third World Network. It is these directions in which the genetic information track is moving in order to produce valuable models for genetic governance both in the US and globally. Thank you.