NIH Consumer Day 2000 To Explain Impact - of Human Genome Project on Public Health

NIH Consumer Day 2000 To Explain Impact
of Human Genome Project on Public Health

November 2000

The National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH) will sponsor "Consumer Day 2000" on Thursday, November 9, to inform patients, families and health care providers about how the Human Genome Project (HGP) will impact health and the prevention, diagnosis and treatment of diseases from Alzheimer's to strokes.

The free event is targeted to draw attendance from the community and area health advocacy organizations. Registration is required and begins at 7:30 a.m. Consumer Day 2000 will take place from 8:30 a.m. to 5:30 p.m. at the Natcher Conference Center on the National Insitutes of Health (NIH) campus near the Medical Center Metro station.

The historic announcement in June by the Human Genome Project public consortium that it had assembled most of the 3-billion-letter sequence of the human genome - the genetic blueprint for a human being - has been hailed as the starting point for a new era of genetic medicine. Consumer Day 2000 brings together scientists, scholars and the community for discussion about what this research means.

Consumer Day 2000 will open with a presentation by Dr. Francis Collins, director of NHGRI. The day will feature discussions about genetic testing and counseling, privacy and fair use of genetic information, as well as hosting an open forum for attendees to express their views, interests and concerns.

In the afternoon, Dr. Harold Freeman, president, CEO and director of surgery for North General Hospital in New York City, head of the National Cancer Institute's Health Disparities Center, and chairman of the President's Cancer Panel, will discuss his views on how race is primarily a social and cultural concept, not a biological one. However, he says there is a societal need to "understand the meanings of race, racism, culture and class in order to tackle health disparities."

For example, according to the American Cancer Society, for all ages combined, white women are more likely to develop breast cancer than African-American women, but African-American women are more likely to die of breast cancer than are white women. Dr. Freeman attributes such health disparities between groups to socioeconomic and cultural factors, not genetic differences.

The event will feature a special exhibition of "Positive Exposure" photographs by world-renowned fashion photographer Rick Guidotti. Guidotti founded Positive Exposure about two years ago in collaboration with epidemiologist Dr. Diane McLean, after becoming "disenchanted with the conventional standards of beauty in our media-driven society," he explained.

Guidotti gained recognition in the 1980's by photographing famous models including Christy Turlington and Cindy Crawford and high-profile personalities for Revlon, L'Oreal, Elle, Harper's and Vogue. One day at a local bus stop he noticed a "stunning" 15-year-old girl with albinism, whose physical characteristics would not be considered representative of cultural "beauty standards." He decided to leave behind a $3,500-a-day photography "gig" and learn more about albinism.

What followed was Positive Exposure, an innovative, international program combining photography and interviews to "concurrently investigate the social and psychological experience of having albinism." His photographs feature teens and adults with albinism who live in Fiji, New Zealand, Australia, French Polynesia, the Cook Islands, Samoa, Panama, Europe, the United States and Canada.

According to NHGRI policy analyst Dr. Monique Mansoura, the Positive Exposure exhibit will provide a fun way to draw attention to Consumer Day 2000 and get people to pay attention to genetics by way of art.

"The exhibit was chosen because it engages individuals who might not otherwise express interest in the Human Genome Project," said Dr. Mansoura. "We're using the art world as a bridge to help people understand why learning about the Human Genome Project is so important, and ideally can be used to improve the health of the community. It's a way to get in the door."

The Genome Action Coalition, the Genetic Alliance, the National Health Council, and the Intercultural Cancer Council assisted NHGRI in the planning of Consumer Day 2000.

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