Geneforum's Public Policy Partnership (PPP) process lies at the heart of Geneforum's spectrum of strategies for helping to guide the formation of genetic/genomic policy at the state level in the area of genetic privacy and research.
We suggest the PPP process as a more generalizable model for addressing the governance of emerging technologies, both within the field of genetics/genomics and outside of it.
Following are some general statements and observations to frame the details of the process.
The challenge: How do we translate the diversity of public values and opinions into a policy position that most people are able to accept?
The PPP (Geneforum) process stays out of interest group advocacy, party politics, and lobbying. Geneforum, using the partnership approach, doesn’t act as provocateur, or as a social critic—that’s the “Protest Model.” Geneforum follows a rational model in our citizen deliberations and in front of policy makers.
Technology policy decisions should not be made by bureaucratic fiat. The role of the expert is clear and necessary in describing what is possible, but cannot and should not be expected to present the broad values that inform a just democracy. People must decide for themselves.
In the PPP process, the values of policy makers, experts and citizens all have equal weight in the policy process. As a result, more efficient policy occurs downstream.
The PPP community meetings do not offer “know how” information. We do offer important “know-why” information to the policy making endeavor, along with input from technical experts, advocates, lobbyists, and organized civic groups. Participants will offer stories as examples of outcomes drawn from, for example, an issue like DTC genetic testing; genetic privacy; biobanking; or whole genome sequencing which they fear or hope for.
There are four broad goals of Geneforum’s public participation/engagement process:
The PPP process has something in common with qualitative research. The similarity with qualitative research lies in the analysis and organization of the participants thoughts about hopes and worries into conceptual categories that can serve as a checklist for the receptor site (an entity that legitimately can take action) as it finalizes its decisions about options that will give specific shape to its comprehensive plan.
Geneforum also uses online blogging, public forums, town hall meetings, and surveys for public deliberation on issues where citizens explore benefits, costs and consequences generated by the different levels of community meetings (see implementation process).
From the outset, all with a stake (legislators, citizens, experts, conveners, receptor site) are involved in authentic ways; all have a role in the final agreement; a “bottom-up” process. Public concerns are authentically addressed.
Our experience in Oregon indicates that engaging the general public in complex public policy issues works best when policy makers, the public, and technical expert are understood partners in a common endeavor and as members of the same community with different roles to play in serving the common good.
“Common good” refers to those goods held by a people in common (e.g., public education, culture, penology, and law). It is closely linked to the idea of a republic—which refers to those public things (the res publica ) around which a constitution is created. To hold things in common is the preface to governing in common, which is why republicanism is generally the condition for democracy. It is, in fact, the set of terms around democracy, including citizenship, civic liberty, community and the commons, that are put at risk by the forces associated with globalization.
A deficit of scientific knowledge (scientific literacy) amongst the general public often leads policy makers to rely solely upon expert input and omit or trivialize the ordinary citizen’s role in policy development. However, citizens do not need sophisticated technical knowledge about genomics to play a valuable consultative role in the policy process, namely articulating values that inform the common good of their community. For example, how private genetic information should be used is not a factual matter to be decided by experts, but a value emergent from the community.
Facts describe something about the way the world is now or could be in the future. Facts also describe the way people or social institutions typically behave now or are likely to behave in the future.
Values name what it is about some state of the world or social behavior that we find attractive, desirable, and admirable (or repugnant, undesirable, or shameful).
From Values to Policy: Four Phases
Surveys force people into boxes. The PPP process comes without a box.
Geneforum’s style of engagement is committed to democratic practice, not advocacy.
As point of departure, a Sponsor, Receptor Site, and/or Legislator identifies and raises an issue (or opportunity) that calls for a collaborative (partnership) response.
Conveners (e.g., Geneforum) and participants (citizens and experts) frame (or reframe) the issue to open the way for deliberation (e.g., create scenarios/framing workshops designed to stimulate participants’ thoughts, imaginations, and feelings -- a stimulus for discussion.
Framing sessions consist of several steps:
Our meetings are part of a larger process. We're assembling a series of conversations on behalf of the Oregon Legislature’s Advisory Committee on Genetic Privacy and Research (ACGPR) relevant to its statutory mandate of public education and soliciting public values from Oregonians.
There are other important dimensions of the committee’s public accountability. They include consultation with a variety of technical experts. They have an open door for input from legislators with an interest in the topic under consideration and from advocates, lobbyists, and organized civic groups.
Geneforum’s meetings contribute to that whole process. We don't offer technical "know-how" information. We do offer important "know-why" information.
The discourse we have designed for these meetings has the following structure.
1. Setting the context
2. Small group discussion of scenarios
3. Reporting from the tables
4. General discussion
5. Final “Thank you” from spokesperson
The PPP process can deliver three possible outcomes to policy makers:
The University of Michigan, Genetics Public Policy Center, Genetic Alliance for example—in the mode of advocacy groups mobilized around a cause—use a (top-down) "Recitation Model" with an emphasis on public engagement mobilized to bring a group of (demographically non-representative) individuals (lay, experts, policy makers, etc.) together into a guided-focus group discussion designed to deliver some important ideas to policy makers. This process captures what people bring into the room with them (interest, knowledge, etc.). A small amount of directed education also takes place.
The PPP process leads to a more educated policy maker about technical issues and public values. The PPP process also leads to ongoing public education (improved science literacy), and ultimately to a more efficient science and technology policymaking process.
Is the world mired in what might be called a "democratic recession?" US policy makers should view democracy not just as a "right," but also as a "choice." A functioning democracy requires a society-wide agreement on issues of national importance (e.g., genetic discrimination, human biobanks and genetic research databases, genetic enhancement, genetic testing, genome-wide screening) designed to provide checks and balances that disperse political power and protect the rights of minorities.
Scientists tend to treat communication as an after-thought. They’re often not working with social scientists, industry, or organized civic groups to build a channel to the public.