Federal Law Needed to Protect Genetic Privacy

WASHINGTON—Sept. 19, 2006 —Two-thirds of Americans (66%) say they are willing to donate their own genetic material in order to help scientists study disease, according to a Research!America national public opinion poll released today.

When asked if current laws are sufficient, three in four Americans (76%) say Congress should pass a law specifically to protect a person's genetic information from being used to discriminate against them.

The poll results were released during a forum discussion about the challenges and opportunities of personalized medicine, which was defined in the poll as the ability to analyze a patient's genetic makeup to allow physicians and researchers to better predict, detect and treat disease.

Just one-third (33%) of Americans have heard the term "personalized medicine," but once it was defined for them, a strong majority said they think the increased availability of personalized medicine will improve diagnosing diseases (85%) and evaluating a patient's risk for disease (82%).

Americans are split on whether personalized medicine can help control health care costs, with 49% saying they expect personalized medicine to have a positive impact on health care costs and 40% saying the opposite.

"Americans are just becoming familiar with 'personalized medicine,' a field still in its infancy but with enormous potential to save lives and enhance quality of life," said Mary Woolley, president of Research!America. "Today's forum discussion will help identify what we need in terms of policies, research and public education in order to realize the promise of personalized medicine sooner rather than later."

Poll findings indicate that Americans are quite optimistic about when the benefits of personalized medicine will be realized, with more than one in three (34%) saying "in the next decade," a quarter (24%) citing "in the next 25 years" and 7% saying we are already seeing benefits.

The forum, "Personalized Medicine: From Promise to Practice," co-sponsored by Roche and The George Washington University School of Public Health and Health Services, and held at the university, was attended by community stakeholders, policymakers and members of the public. Moderated by Susan Dentzer of "The NewsHour with Jim Lehrer," attendees heard from some of the nation's leading experts about the need for increased investment in research, timely and informed clinical application, setting realistic timetables, and securing stakeholder and public participation throughout the process.

"Personalized medicine has the potential to revolutionize how we approach the prevention, diagnosis and treatment of all diseases," said forum keynote speaker Francis Collins, MD, PhD, director of the National Human Genome Research Institute at the National Institutes of Health. "We are at the beginning of a journey that holds much promise, but it will require thoughtful research and vigorous debate among scientists, health-care professionals, ethicists, legal scholars, patient advocates and ordinary citizens to chart the wisest course."

About Research!America

Research!America is the nation's largest not-for-profit public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, it is supported by more than 500 member organizations, which represent more than 125 million Americans. Research! America has been gauging Americans' attitudes toward medical and health research for more than a decade.

Research!America commissioned Charlton Research Company to conduct a telephone survey using Random Digit Dial methodology among 800 adults nationwide. The sample was proportionate to the country's demographics, including geography, gender and ethnicity. The survey, fielded in August 2006, has a theoretical sampling error of ± 3.5%.

 

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