Today you get a break from climate change in favor of bioethics. I had the chance to learn from some distinguished bioethics scholars from MSU and the University of Michigan, so I’d like to share some of what I learned!
The theme of today’s “words of wisdom” session was community engagement in genetics policy. We often think of elite scientists and policy-makers as the ones who set health policy, but scholars (including philosophers and social scientists) are increasingly realizing the importance of engaging the public in these science policy issues. This goes beyond just educating the public (remember the “loading dock” model from my last blog?). Some engagement models that I learned about are called “rational democratic deliberation,” “community-based participatory research,” and “community-based dialogues.”
Including community members in a dialogue process about genetic policy was spurred by Francis Collins, who led the Human Genome Project and is now the head of the National Institutes of Health. Collins realized that research on genetics also needed to incorporate the “ethical, legal, and social implications” of this research and how it is used in society. The bioethics researchers at UM and MSU specifically wanted to elucidate some common moral values about reproductive technologies and policies, such as whether genetic testing should be mandatory. First they wanted to hear from a representation of diverse value perspectives on genetic policy, including Right to Life and disability advocates. They held community dialogues on the genetics policy issues and said that even these polarized views has respectful discussions.
Bioethicists are especially aware of the legacy of distrust of genetic research in minority communities, because of past injustices such as the Tuskegee experiments, the eugenics movement, and a more recently uncovered story of Henrietta Lacks. So the bioethicists decided that they didn’t just want diverse interests represented in their discussions; the next step was to bring together communities of color for dialogues. The bioethicists worked with existing African American and Latino community-based organizations (CBOs), and they let the CBOs choose who would participate, where they would hold the sessions, etc. The existing organizational structure of the CBOs also meant that people could more easily decide who and what to advocate once the dialogue sessions were done (the groups actually met with policy-makers in Washington, DC). Information from all of the dialogue sessions was written into academic and policy reports, and community representatives were involved in the writing and review process. A full report of their study is located here, but you need a journal subscription to access it.
One of the great things about these public dialogues about science policy is that people often change their views once they start to consider the complexity of the situation, and to form rational moral values even on highly controversial topics. But there are certainly challenges to this process: issue advocacy and deeply entrenched political polarization can hinder the dialogue process, community dialogue groups can lack legitimacy and credibility in policy settings (or fail to distinguish themselves from other “interest groups”), and especially when working with communities of color, project administrators must be constantly aware of issues of equality between the participants and academic researchers.
The question that I was left with (and that I asked and we briefly discussed) was how to bring this information back to scientists. The community dialogues obviously brought up a lot of discussion about what directions and limits there should be to genetic research: especially with regards to stem cells, cloning, biotechnology and prenatal genetics. It wasn’t really the purpose of this study to bring the dialogue results back to scientists, or to have the community groups involved in shaping scientific agendas, but this seems like an area ripe to explore in the future. “Molding the pipeline into a loop” is a good example of this.
Currently, community members and issue advocates are represented on grant/research review boards and bioethics committees for public research. There is a general faith, even in marginalized communities, that investing in more public research, in combination with government regulations on the limits of research, will result in societal benefits. But some science policy and STS scholars warn about what might happen when advocates don’t see results. What do you think? To apply this to my work with MSU Extension/Kellogg Biological Station, what would happen if we find out that climate models aren’t useful to farmers, or that we can’t solve the problem of climate change using science? This is hypothetical- but we have certainly realized that there are limits to science, unintended consequences, and that stakeholders face a variety of opportunities and constraints in actually using scientific information for decision-making.