Public Health Genomics
See attached for the Spring Term 2014 Genomics Course syllabus.
In 1953, two young scientists published the structure of DNA, a Nobel Prize winning discovery that gave birth to the Interdisciplinary field of genomics. Beginning in 1990, scientists around the world embarked upon the Human Genome Project, with the goal of determining the composition of the entire human genome. The project is now complete, but there is so much more to learn from the genome: how our bodies function, how to prevent diseases, what makes different species unique, and even how life evolved on earth.
To ensure that future scientists, physicians and policy makers are prepared to take full advantage of the genomic revolution, the National Research Council issued a report (BIO2010) calling upon academic institutions to alter the way their students prepare for post-baccalaureate education in the health care professions.
“Genomics offers a growing range of technologies to help prevent, detect, diagnose, and treat disease. Appropriate policies are however necessary to ensure that the right tools reach the right people at the right time.” — Organization for Economic, Co-operation and Development (OECD, 2011)
If ever there were an area of medicine that is appropriate for lifelong learning, it is genomics, the study of the functions and interactions of all the genetic material (DNA) belonging to an organism, including interactions with environmental factors to understand the root causes of disease and to better understand how an organism works. Because it is a young and quickly evolving field, it is difficult to precisely determine either the genomic knowledge or the clinical application of that knowledge that will be required for healthcare providers in the future. Indeed, the integration of genomics into evidence-based public health research, policy and practice is one of the major future challenges for our global health-care systems.
The Boston-area special needs school, which is called the Judge Rotenberg Center, enrolls students ages 3 to adult, all of whom are either autistic children or are struggling with severe emotional, behavioral or psychiatric disorders. Those students who display undesirable behavior, reports ABC News, are subjected to a treatment which the United Nations is calling "torture." All of the Judge Rotenberg students are subject to shock treatment.
Source for this article: Autistic kids subjected to shock treatment at Mass. School by Personal Money Store
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?Â
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:
- Confirm the policy maker's previously held assumptions;
- Warn policy makers about areas of the proposed policy which may be sensitive or unacceptable to the community;
- 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
- Identification of a clear policy connection (i.e., generating the core values of citizens BEFORE positions have hardened and policy solutions have been formed).
- 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.
- 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).
- 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.