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Public Policy Partnership Process

Genetizen — Sun, 30 Nov 2008 19:34:27 -0500

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.

CDC hosts online Public Health Genomics seminars

CMKings — Wed, 27 Jun 2007 22:59:06 -0400

Muin J. Khoury, MD, PhD, Centers for Disease Control and Prevention National Office of Public Health Genomics director, hosts a monthly Public Health Genomics Seminar Series. Sessions for the remainder of 2007 include such diverse topics as family history, regulation and overview, and health disparities. See the attached for a list of topics. The Web page also includes stored videocasts and pdfs of presentations. Logon for the next seminar July 26, 2007 1 - 3 p.m. CST at http://www.cdc.gov/genomics/events/special1.htm

Help end genetic discrimination

mgodfrey39 — Wed, 25 Apr 2007 12:08:49 -0400

Here's an ACTION ALERT from the Genetic Alliance
Help End Genetic Discrimination!

Ask your representative to vote for Genetic Information Nondiscrimination Act
Today the House of Representatives will consider the Genetic Information Nondiscrimination Act (H.R.493) on the Floor, probably as early as 11 AM! This legislation protects all Americans from discrimination by employers and health insurers based on genetic information.

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Facing Life with a Letal Gene

webmaster — Tue, 20 Mar 2007 22:40:14 -0400

The test, the counselor said, had come back positive. Katharine Moser inhaled sharply. She thought she was as ready as anyone could be to face her genetic destiny. She had attended a genetic counseling session and visited a psychiatrist, as required by the clinic. She had undergone the recommended neurological exam. And yet, she realized in that moment, she had never expected to hear those words. "What do I do now?" Ms. Moser asked. "What do you want to do?" the counselor replied. "Cry," she said quietly. The rest of this poignant story is part of a recent

Oregon State-Wide Telephone Survey Results on Gene Doping

webmaster — Fri, 01 Dec 2006 19:19:37 -0500

In August 2004, Davis, Hibbits & McCaig, Inc. conducted a state-wide telephone survey of 500 Oregonians on the topic of gene doping. Below are the results from the survey.

See results

Online Survey Results on Gene Doping

webmaster — Fri, 01 Dec 2006 19:16:25 -0500

Following the Geneforum/PSU Public Forum on Gene Doping, geneforum posted an online survey on its Web site. Below are the results from that survey.

See results

Results from Oregon College Athlete Gene Doping Survey

webmaster — Fri, 01 Dec 2006 19:13:36 -0500

In 2005, Geneforum approached athletic directors at Portland State University and University of Oregon to ask whether their athletes would be willing to participate in an online survey on the subject of gene doping. Below are summary results from the 115 athletes that completed the survey.

See results

Researchers look to head off gene doping before it starts

webmaster — Fri, 01 Dec 2006 18:47:06 -0500

Monday, February 07, 2005
THE OREGONIAN

Rachel Bachman

(February 7) For decades, doping in sports has been a mismatched race: the drug-taking athletes and their agents sprinting in front, sports' governing bodies and their tests lagging behind.

The new threat to competitive sports is not a drug. It does not leave evidence in the bloodstream or urine. Yet it has created super-muscular mice in lab tests and has athletes and coaches salivating over its potential.

It is called gene doping, and it could offer athletes an undetectable way to get ahead.

The difference this time around is that almost no athletes, if any, have tried the technique. For once, anti-doping advocates seem to have a head start on the cheats.

Today, a few leading researchers will convene at the World Anti-Doping Agency in Montreal to attack the issue of testing for gene doping, the practice of introducing specific genes into the body to stimulate muscle growth, metabolism or endurance.

On Friday morning, Portland State will play host to a panel discussion on human genetic enhancement featuring one of the world's leading authorities on the subject, Dr. Theodore Friedmann. Discussion organizer, Greg Fowler, a geneticist at Oregon Health & Science University and Founder and Executive Director of Geneforum (www.geneforum.org) said he hopes the discussion will further a national conversation on the implications of genetic manipulation for athletic gain.

Friedmann, director of the Program in Gene Therapy at UC San Diego, said society already has accepted treatments such as mood-lifting drugs and plastic surgery.

"So the question of course is: If you can improve a human being's performance in many ways with drugs, why not with genes?" Friedmann said. "What is the scientific or ethical or policy difference between the two? That, a lot of people are struggling with." What is gene doping?

Gene transfer involves the delivery of synthetic genes into human cells, where they become indistinguishable from a person's DNA. Once installed, the genes can slow muscle atrophy, speed up the body's metabolism or augment the muscles helpful for certain activities. One study, for instance, produced genetically altered "marathon mice" able to run an hour longer than unmodified mice.

Studies of gene transfer, focusing on its therapeutic potential against diabetes, muscular dystrophy and other genetically based ailments, have been around for decades. But in recent years, they have produced dramatic successes.

Those results have tantalized athletes, who always have thirsted for the next big advantage.

H. Lee Sweeney, a physiologist at the University of Pennsylvania, and his partners treated mice with a synthetic gene that made their muscles grow 15 percent to 30 percent larger than normal, even though the mice were sedentary. No sooner had Sweeney announced his study results than he was fielding phone calls from athletes and coaches, he told the Los Angeles Times.

One high school football coach asked whether Sweeney could inject his players with the gene that had bulked up the mice. The risks

Human trials in gene therapy have produced mixed results. In 1999, 18-year-old Jesse Gelsinger died suddenly after undergoing experimental gene therapy for a metabolic disorder. Although gene therapy successfully has treated children with the immune-system failure called "bubble-boy disease," it also has misfired, causing leukemia.

The danger is that unlike drug therapies, it is difficult to turn off gene therapy. Once the genes are in the body, they are there to stay.

"That really again emphasizes the fact that you don't use these tools frivolously, for anything other than serious disease, and not for tampering with enhancement kinds of goals," Friedmann said. The challenges

Gene doping is on WADA's list of prohibited substances and methods yet it remains an irresistible idea to many athletes.

"Another problem is that the money required to do such work, set up a laboratory and go in this direction, is not enormous and by athletic standards is absolute chicken feed," Friedmann said. "So if I were really a rogue and intent on doing this and evading all the relevant oversight mechanisms, I could do sort of a ham-fisted, bad job of it.

"But to do it well and rigorously and carefully and safely in athletes, I could not."

Another scheduled panelist for the PSU forum, Maxwell Mehlman, said the threat of gene doping is another example of sports' losing battle against humans' attempts to gain an athletic advantage. Mehlman, a professor of biomedical ethics at Case Western Reserve University in Cleveland, said catching doping athletes grows more difficult with each leap in technology.

"At some point, I think we really have to rethink, 'Is it worth it?' " Mehlman said. "Ultimately, is it worth it to continue to have the pleasure of watching people target-practice with muzzleloaders? Or is it time to just say, 'Well, it's just too hard because we can't tell the difference between muzzleloaders and automatic machine guns anymore without a great deal of too much effort. So we'll just have shooting.' " The future

Lance Deal, a 1996 Olympic silver medalist in the hammer throw and an assistant track and field coach at Oregon, said he considers athletes manipulating themselves to be cheating.

"If they decided to find something that would cure my defect in my ear so I could hear on one side . . . yeah. Sure," Deal said. "But that's so I can hear my daughter. That's not so I can get a silver medal in the Olympics."

Yet as Sweeney wrote in his story in the July issue of Scientific American, the 2004 Athens games might have been the last Olympic games without genetically enhanced athletes.

Friedmann, the leader of WADA's gene doping panel, said he is confident that effective, manageable testing methods can be found. But when asked for the worst-case scenario for gene doping in sports, Friedmann invoked the scandal involving the Bay Area Laboratory Co-Operative, implicated in the doping of numerous high-profile athletes.

Gene doping, Friedmann said, "is a genetic equivalent of BALCO. It can happen."

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Rachel Bachman: 503-221-4373; rachelbachman@news.oregonian.com

Kaiser Permanete letter to participants June, 2006

mgodfrey39 — Wed, 28 Jun 2006 12:33:43 -0400

The pages in the three attachments are photographic copies of the letter sent to those insured by Kaiser Permanente in Oregon.

Strategies to help patients understand risk

mgodfrey39 — Thu, 15 Jun 2006 15:45:57 -0400

Here's where to find the article on "Strategies to help patients understand risks":

http://bmj.bmjjournals.com/cgi/content/full/327/7417/745

You will have to download the pdf (Adobe) file.