Genetics at the community level.

Francis Collins, director of the National Human Genome Research Institute (NHGRI), picked up a guitar and sang to close out the Seattle community genetics forum. To the tune of the 1961 rock-and-roll song "Runaway" and enthusiastic audience response, he imagined the thoughts of a person in 2015 upon seeing their personal genomic data for the first time: "As I walk the bases/in all three billion places/I wonder/am I built for strong endurance or loss of health insurance?"

Ethical, legal, and social issues were a primary focus of the 21 May 2005 community forum, held at the University of Washington (UW). "This is a historic time for our species," said Collins during his keynote address. "We have, for the first time, the ability to read our own instruction book. We have the responsibility to do so in ways that don't injure people."

About 300 students, teachers, and community members attended the event, which was organized by the UW Center for Genomics and Health Care Equality (with funding from NHGRI) and the UW Center for Ecogenetics and Environmental Health (with funding from the NIEHS). The centers were assisted by an advisory committee of UW genomics experts.

Advances in genomic science--such as genetic testing to determine optimal medication dosing--are making "personalized medicine" a reality, said Collins. At the same time, the increasing ability to collect genetic information about individuals raises concerns about how that knowledge may be used, perhaps by potential employers. Collins also raised larger issues: "Will knowledge of human variations reduce prejudice or increase it? Will we succumb to genetic determinism, neglecting the role of the environment and undervaluing the human spirit?"

High school students at the forum included winners from the 18 March 2005 Student Biotech Expo, sponsored by the nonprofit Washington Biotechnology and Biomedical Foundation. Several students reprised prize-winning performances. A rap called "Doggin' Genes," written and performed by Heather Earp and Hana Fallisgaard of Shorecrest High School, described the sequencing the dog genome. A two-person play about genetic testing, written and performed by Maya Sugarman and Rhiannon Bronstein of Garfield High School, explored the quandaries of undergoing genetic testing for a disease for which there is no cure.

Staff from throughout NHGRI attended the forum to hear community concerns and take them back to institute programs, said Vence Bonham, chief of the NHGRI Education and Community Involvement Branch. Forum presentations and breakout sessions focused on topics including medical uses of genetic information, racial profiling and DNA evidence, behavior and genetics, and genetic discrimination related to employment and insurability. Panel discussions covered a wide range of additional topics including the cost and availability of genomic medicine.

"Most Native American people don't have access to available treatments that could make them better," said speaker Ralph Forquera, executive director of the Seattle Indian Health Board. Until access to basic care is improved, he said, advances such as genome-based personalized medicine are "fluff," and will benefit only affluent people.

Makani Themba-Nixon, executive director of the nonprofit Praxis Project, wondered if an overemphasis on genomic research could obscure the importance of sociopolitical considerations such as links between environmental pollutants and health. Collins said that large-scale studies that include data on environmental exposures as well as genetics are needed to better understand genetic effects on health. "It would be expensive," he said. "It would have to be a political priority."

Speakers and meeting participants also discussed the need for better understanding of genomic science among community members and health care providers. Sharon Terry, president of the nonprofit Genetic Alliance, commented that, until her sons were diagnosed with a genetic disorder, she "didn't know a gene from a hubcap." Added Forquera, "We need to find a way to make genomic information interesting, engaging, and accessible." Presenters gave several examples of effective nonlecture formats for conveying genomic information, including the use of individual case studies in discussing genetic testing. Elaine Armstrong, a high school teacher from Battle Ground, Washington, said case studies are useful in the classroom, because they grab the students' attention.

"I was pleased to talk with such a diverse range of participants representing many different communities," said Collins after the meeting. "What I am most excited about is to see what happens next, and to find ways to continue to actively engage members of the public in this dialogue."