PSU Magazine Fall 2000

• samples were used for research-with the permission of Everett and her hu band. "Like any parents, we hoped some– thing good would come out of it. At the same time, we were uncomfortable with the idea of him becoming a research sub– ject," she says. She asked the medical professionals where the samples would be-if they would be transferred to a different lab-– because she didn't like the idea of not knowing where "Jack" was, even if it was only his cells. She asked about the kinds of research that would be done, and learned that the tissue samples could be used for a variety of purposes not yet known. Will there come a time when you will be denied a job because your prospective employer was able to look at your personal genetic profile? tect of the public involvement process for the Oregon Health Plan and did similar work for Oregon Health Decisions. It was through that project that he met Fowler, and became part of Geneforum. When trying to find out what the public is thinking on controversial issues, decision makers typically use quantitative analysis-in other words, they survey the public and find out what percentage is for or against a certain issue. One problem with this approach is its corruptibility, says Anderson. Some organizations get paid for flooding polling systems with phony data, which distorts the numbers, he adds. Her discomfort peaked in 1999, when the Oregon Senate voted to change the Genetic Privacy Act to broaden the parameters for testing. She wrote to The Oregonian newspaper: "... my own experi– ence tells me that more than our genetic codes, the Senate may have signed away our very identities to the biotechnol– ogy industry." Now a member of GRAC, Everett can lend an even stronger voice to the issue. "There is a point at which I don't want my child to be used for profit-at least without my thought or participation. So, my concerns are that consent not be lost with whatever changes the Legislature makes and that we retain the ability to make decisions," she says. A other voice on the Genetic Research Advisory Com– nittee is Gregory Fowler, a clinical associate professor of public health at Oregon Health Sciences University. Struck by the lack of public involvement in the whole genetics issue, he founded Geneforum in 1998 as a way to funnel public comments to lawmakers. By logging on to www.geneforum.org , participants can post messages about a number of ethical dilemmas regarding genetic research, genetic enhancement of crops, and the use of human DNA. You can "Visit The Doctor" and fill out a form asking your consent for your tissues to be used in research. Each question on the "clipboard" is paired with a link describing the benefits and risks of your decision. Click on "Go Shopping" and you are given the choice of buying foods that are genetically engi– neered, unlabeled, or organically grown. Which would you pick? It asks you to give a reason. Ultimately, all posted com– ments will be used by members of the GRAC. The whole idea of Geneforum is to create an informed populace. People will have opinions anyway, and many of those opinions will find their way to high places. Fowler just wants them to have a sound basis. "The public will appear at the door. The question is what will they be brandishing?" he says. The designer of the public input section of geneforum.org is Barry Anderson, PSU professor emeritus of psychology. A spe– cialist in how people make decisions, Anderson had been working in this arena for a long time. He was the chief archi- Anderson took a different approach with Geneforum. He used a qualitative method, relying on written statements of the participants. It's less corruptible, and it offers the public opportunities to make creative suggestions on the whole genetic privacy issue. "One bright person could make a suggestion that could affect the whole issue. That person's opinion will be heard by the governor and the Legislature," says Anderson. In addition to giving people a chance to express them– selves, the Web site also allows participants to see what oth– ers have written and to respond to those comments. "This is a good way to make this democracy work a little bet– ter, and provide a more meaningful way to make decisions. The problem is getting people to show up at the Web site," he says. On the Web since March, Geneforum is still fairly new. Fowler says other bioethics organizations are asking to put Geneforum banners on their sites, so he's confident traffic to Geneforum will continue to grow. T here's plenty to comment on, with issues such as genetic privacy and genetically altered food. The ramifications of science's ability to know about and manipulate DNA are vast. American agricultural companies are fighting multimil– lion-dollar public relations battles over the genetically modi– fied crops they produce, largely because European countries don't want to buy them. Then there's the potential of stigmatizing people based on their genes. We already know that the incidence of prostate cancer is higher than average among a certain Jewish ethnic group, and that sickle cell anemia targets African Americans. What other diseases will scientists be able to link to other ethnic groups, and how will that knowledge affect their abil– ity to get insurance? Let's say the women in your family have a higher than average incidence of breast cancer. Will there come a time when you will be denied a job because your prospective employer was able to look at your personal genetic profile? These are just a few of the ethical dilemmas Patricia Backlar is tackling as a member of the National Bioethics Advisory Commission (NBAC) . A member of PSU's philoso– phy and sociology faculty, Backlar is one of 18 high-profile FALL 2000 PSU MAGAZINE 9