This discovery may undercut the rationale behind numerous large-scale genetic studies conducted over the last 15 years, studies which were supposed to isolate the causes of scores of human diseases.

Most body samples used in large-scale genomic studies are saliva or blood. If these samples have DNA that doesn't match genetically to cells in the diseased or affected tissue--which this report suggests is likely--then, the samples may not tell us "the truth" about the DNA makeup responsible for the disease being investigated. Thus, "ambitious and expensive genome-wide association studies may prove to have been essentially flawed from the outset."

Perhaps you've been reading in the news lately about genes "for" autism, obesity, cancer, sudden heart attack . . . . . . and on and on.

What are all these reports about? 

Most of the reports you see are based on genome-wide association studies, or GWAS. You pronounce this acronym: gee wahs.

The genome, by the way, is the full set of DNA (the inherited material) in a human, mouse, yeast, or whatever is being studied. In most interpretations, genomics--the science of genomes--includes the study of environmental as well as genetic information. However, GWAS are usually studies of the DNA of large populations of people with disease X compared with 1) people who don't obviously have the disease or with 2) some sort of DNA standard.

We've started posting presentations from a number of our community talks to SlideShare. Our first one is entitled "The Genomics Policy Process: Forming Partnerships Between Citizens, Experts, and Policy Makers," by Drs. Fowler, Allison, and Garland at Translating ELSI: Ethical, Legal and Social Implications of Genomics, Case Western Reserve University, May 3, 2008.

Community meetings aim at gathering expressions of hopes and concerns about issues raised by emerging (bio)technologies in genomics (such as stem cell research, biobanking, DTC genetic testing) nanotechnology, neuroscience and synthetic biology from various communities around Oregon.

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.

The PPP process can deliver three possible outcomes to policy makers:

1. Confirm the policy maker's previously held assumptions;
2. Warn policy makers about areas of the proposed policy which may be sensitive or unacceptable to the community;
3. Generate an insight (sometimes from a single individual) which will give a new (and unexpected) direction to the policy discussion and, ultimately, the policy, itself.

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.

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

1. Identification of a clear policy connection (i.e., generating the core values of citizens BEFORE positions have hardened and policy solutions have been formed).
2. Activating the community resource network (i.e., tapping into community organizations and individual leaders and their constituencies, enclaves with a feeling of community; training cadre of volunteer community meeting facilitators and table leaders to be active listeners and NOT educators capable of getting to “Why is that important to you?”). It is important that the citizen discourse is not overwhelmed by the values of the expert/technocrat.
3. Gathering and synthesizing the check list(s) of citizen values into a policy guideline (i.e., summary report(s) using an on-line Delphi Method performed iteratively until there is agreement among those participating in the review process drawn from each of the off-line sites).
4. Advising the primary policy audience (i.e., receptor site/legislator) via a Final Report which reflects input from a) the public; b) experts; and c) policy decision makers. The goal is to produce a document more difficult to dismiss and easier to apply to decision-making than the report generated by the typical public consultation process.

Surveys force people into boxes. The PPP process comes without a box.

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).

Collaborative Governance

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.

Framing

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.