Public Health Genomics

A Qualitative Process

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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).

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Collaborative Governance & Framing

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.

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Four Goals

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The challenge: How do we translate the diversity of public values and opinions into a policy position that most people are able to accept?

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Public Policy Partnership Process

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.

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Social factors more important than genetics

While many people, especially in the US, have become focused on the genetics of health, many times that number have their health determined almost solely by social factors. You have to have food and water long before you are rich enough to worry about inheritance as a factor in your health.

An article in the Australian News today puts the issue into clearer focus with its title, "Being poor kills":

For instance, a boy living in the Glasgow suburb of Calton is expected to live to 54 - 28 years less than a boy born in affluent Lenzie nearby. 

| read more | mgodfrey39's blog

Genetics for Dummies

Some time ago, my daughters suggested I write a "dummies" book about Genetics. I really don't like the series, but decided to think about it.

A few days ago, I did just that--think about it, that is--by checking out a link from some page that referred to genetics education sites. I found that there is already a Genetics for Dummies book, published in 2005, and written by a geneticist from the Northwest. 

Scooped again. But that leave more time for other things. 

If you're interested in reading this book, and other books on many, many topics, you can download free online versions. The site's bookmarked on my other machine, so I'll have to add it to this post in an edit. I had to register for and download an access program first, but could then download and read the book I wanted.

| | | | | | | read more | mgodfrey39's blog

Welcome to the geneforum blog!

Wow, have I been out of touch lately! A few weeks ago, when I returned to Oregon after selling my home in Utah, I logged in and promised to start posting blogs again.

Didn't make it. So, let's try again.

My personal news is that the Godfrey genetic pool has been increased by one beautiful baby boy, born to first-time parents. He doesn't look like any family member in particular, but does have a couple of features we suspect are genetically determined.

Now that I have access more often to a computer, I will be trying to post more regularly.

Here are some subjects I'm finding of personal interest at the moment. Let me know how these fit with your interests.

| | | | | | | | read more | mgodfrey39's blog

Geneforum partners with University of Guanajuato, Mexico to create bioethics resource for Latinos

Geneforum has added two new members to its Advisory Board - Victoria E. Navarrete Cruz and Fernando Anaya-Velazquez. Both head up the University of Guanajuato's bioethics center (Centro de Investigaciones en Bioethica (CIB) in Mexico.

| read more | gfowler's blog

Geneforum joins Wellsphere

Marie Godfrey and I have been invited by the Chief Medical Officer, Goeffrey W. Rutledge at Wellsphere, to join other medical experts, healthcare professionals, and expert health bloggers around the country in contributing to Wellsphere's new genetics blogging community of more than 100 new health communities. Wellsphere is slated to be launched by the end of August or early September 2008. 

For those of you who do not know, Marie was trained as a geneticist at Johns Hopkins University and worked many years as a medical writer for the pharmaceutical industry.  Marie has played a central role in furthering Geneforum's mission to build an informed citizenry for the Gene Age by helping readers translate what they read in the public media. We hope you'll add Wellsphere to your list of informative sites about genetics.

| gfowler's blog

Introducing Kirk Allison, Ph.D. - Geneforum's Newest Research Fellow

Just wanted to introduce Kirk Allison to the Geneforum community. Kirk, Director of the Program in Human Rights and Health in the School of Public Health at the University of Minnesota, has been involved with Geneforum since June of 2007 when I was a Visiting Guest Lecturer in the inaugural year of a three-week Public Health Genomics course as part of the offerings of the 2007 Public Health Institute at the University of Minnesota.

His research and writings in human rights and public values fueled an eventual collaboration which resulted in a co-authored paper, Technology and Citizenry: A Model for Public Consultation in Science Policy Formation soon to appear in the May 2008 issue of the Journal of Evolution & Technology. From May 1-3, 2008, Kirk and I teamed up to present a paper, The Genomics Policy Process: A Model for Partnering Citizens, Experts and Policy Makers at the Translating ELSI: Global Perspectives on Ethical, Legal and Social Implications of Human Genome Research in Cleveland.

| read more | gfowler's blog