GENEWATCH
 
DEFYING DEMOLITION
By Jodyn Platt, Susan B. King
 
"People of Earth, your attention, please.  As you will no doubt be aware, plans for the redevelopment of personhood, family, and sexuality and morality require the building of a hyper spatial express route through your values, and regrettably they have been scheduled for demolition.  An independent ethics committee has given its approval.  The process will take slightly less than two of your Earth minutes."

- The Hitchhikers Guide to the Galaxy1

 

The current genomic revolution carries promise and peril, excitement and hope, as well as leeriness about loss of control and freedom reminiscent of the dystopias of Orwell and Huxley.  Rapidly developing genetic innovations - such as "DNAWitness" (described in a forthcoming issue2, the creation of designer babies, genetically modified winter tomatoes, and the direct-to-consumer marketing of dubious genetic tests - literally hold the potential to "redevelop personhood."  Without an integrated examination of the implications of this genomic era for society, we are likely to bypass or conflict with personal and community experiential knowledge, building an "express route through our values." What are the implications of biotechnology for self, family, and community?  Without listening to, challenging, and supporting the voices, experience, and stories of our diverse communities, we will never know.  While some of the research and development in this arena falls under the purview of "independent ethics committees" (e.g., institutional review boards, blue ribbon panels) who currently govern genetic practices and policies, these most often do not reflect a diversity of perspectives and are grounded in an ethos of personal choice and rule-bound forms of ethics,   overshadowing the "ambivalence and fundamental contradictions surrounding these new [genetic] technologies, particularly where freedom and coercion are concerned".3

While there is an interrelatedness of scientific research, production of marketable goods, policy and regulation, and discernment on what each of these means to individuals, families, and communities each of these develop along different, independent trajectories.  Not surprisingly, the discernment processes lag woefully behind science and technology.4 The pace of policy, which may bridge community needs with scientific practice, leaves much to be desired - the Genetic Information Non-Discrimination Act (GINA), for example, took thirteen years to pass. It is the process, however, that can produce the substance and sustenance of community cohesion and good public policy. Community-based partnership approaches to policy meet the dual needs of actively deliberating and influencing policy as well as identifying local resources and expertise that can foster support systems in the absence of policy change.

One example of such a partnership created in response to the need for policies reflective of the interests of our pluralistic society is the Genetics Equity Network (Genetwork), launched in October 2005 at the National Workshop on Achieving Equity in Genetics Policy through Diversity in Decision Making. This event was funded by the University of Michigan's National Center for Institutional Diversity and sponsored by Howard University's National Human Genome Center, the Joint Center for Political and Economic Studies Health Policy Institute, and the Life Sciences & Society Program and Center for Public Health and Community Genomics at the University of Michigan. The Network is one example of a partnership model bringing together policy makers and advocacy organizations, researchers and health practitioners, as well as grass-roots community organizations.  It is a group of approximately 50 organizations that are working - through education, advocacy, and policy analysis - to assure that genetics and its applications are used towards the reduction, not the widening, of health disparities.

The Network has developed statements in response to two pieces of legislation: the Laboratory Test Improvement Act sponsored by Senator Kennedy (D-MA), which intends to regulate certain types of genetic tests to assure quality and usefulness; and GINA, which prohibits discrimination by insurance companies and employers based on genetic information (passed, May 2008).  The Network has also spent time discussing the Genomics and Personalized Medicine Act (Obama, D-IL) and the Minority Health Improvement and Health Disparity Elimination Act (Kennedy, D-MA).

While these actions contributed to the policy process, the Network has also supported activities with the more immediate effect of bringing diverse stakeholders together for education and dialogue on the implications of genetics and its applications.  At its kick-off event, forty-two individuals attended, representing a diverse set of thirty-two organizations with varying degrees of experience in genetics, working in communities, developing policy, and engaging in research.  Organizations represented at the workshop included the West Harlem Environmental Action, Inc. (WE ACT), the Association of State and Territorial Health Officers, NIH's National Human Genome Research Institute (NHGRI), National Health Law Program, Families USA, and leaders from the National Community Committee that represents the Community Boards of the CDC-funded Prevention Research Centers.  Staff members from the Offices of Senator Ted Kennedy and Representative Edolphus Towns also attended. 

The Network also co-sponsored a conference organized and convened by a Network participant - WE ACT for Environmental Justice - Genes and Justice: A Community Symposium on Health, Race & Rights on September 24, 2007.  The Network compiled an extensive Resource Guide on Health, Race, and Rights and sponsored multiple presentations.  Approximately 250 individuals attended this day-long event.  In addition, the Network supported the NHGRI-funded Forum Genomics, Community and Equity: A Continuing Dialogue, held in five Midwest states (October 14, 2007), and Online (www.GenoCommunity.org).

Based on feedback received at these events, the Network is currently working on a guided web-conference (webinar) that will identify local and national policy options for individuals and communities who have questions about how DNA and genetics are being incorporated into the criminal justice system. 

As demonstrated by the Genetics Equity Network and its collaborations, public health policy development is iterative, and embodies both a process and an outcome.  By one definition, it is the "means by which problem identification, technical knowledge of possible solutions and societal values join to set a course of action".5 In the case of biotechnology, many of the problems are relatively simple to identify; we already know some of the concerns that genetics and its applications raise:  access, education, playing God - perfect children, the right to genetic privacy, genetic research, stem cell research, genetic testing, and trust and distrust.6 Bridging these concerns with solutions and values-based policy options is the next, plausible, exigent step.  Historically, this social discernment process has often been arduous.  However, time and time again, it has been proven that through activism, people and communities have the opportunity to participate in decision making about how genetic technology is pursued and applied.  Through participation, communities act on their own behalf within the existing paradigm and make changes based on their own diversity of values and beliefs.  This change can, and should, happen now.

Note:  For more information about the guided web conference (webinar), "You want to do WHAT with my DNA?!" September 12, 19, 26, and October 24, visit CrimeandDNA.org.


Jody Platt, MPH, is Assistant Director of the Life Sciences and Society Program at the University of Michigan and chairs the American Public Health Association's Genomics Forum.

Susan B. King, D. Min., is Associate Director of the Life Sciences and Society Program at the University of Michigan.

 

References

1. As cited in: Newell, C., "Disability, bioethics, and rejected knowledge," The Journal of Medicine and Philosophy 31, no. 3 (2006): 269 - 283.

2. Fullwiley, Duana, "Can DNA 'Witness' Race?: Forensic Uses of An Imperfect Ancestry Testing Technology" (This paper was produced for the Council for Responsible Genetics (CRG) and its national conference, Forensic DNA Databases and Race: Issues, Abuses and Action held June 19-20, 2008, at New York University.  Forthcoming in GeneWatch.)

3. Kerr, A., "Governing genetics: reifying choice and progress," New Genetics and Society 22, no. 2 (2003), 111-126. 

4. Kardia. Sharon. (Testimony to SACGHS on October 19, 2005. Transcript available at: http://www4.od.nih.gov/oba/SACGHS/meetings/October2005/SACGHSOct2005postmeeting.htm, 2005).

5. Institute of Medicine, The Future of Public Health (Washington, DC: National Academies Press, 1988).

6. V. Bonham, Jr., et al., "Communities of Color and Genetics Policy Project: Position Papers," (Final Project Report, Policy Reports and Recommendations, October 2001).

 
 
Search: GeneWatch
 
 
 
The use of forensic DNA databases by law enforcement around the globe is expanding at a rate that should be of great concern to civil libertarians.
 
View Project
 
 
For centuries, human societies have divided population groups into separate races. While there is no scientific basis for this, people unquestioningly accept these classifications as fact.
 
View Project
 
 
Tools
PAGE TOOLS
 
 
 
 
ON THE WEB