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New Survey Shows Americans Want Genetic Information in Health Care, But Fear Privacy, Ethical, Emotional Implications.

- Biggest Barrier to Adoption of Personalized Medicine may be Perception, Not Science -

CAMBRIDGE, Mass., Nov. 3 /PRNewswire/ -- While interested in how their genes influence their overall health, Americans lack a comprehensive understanding of genetics, and seek reassurance that genetic information will not be misused, reports market research specialists at Cogent Research, Cogent's findings in their 2005 Survey on Public Support for Genetics (CGAT) reinforce that genetic information, and who benefits from it, is a prominent issue in today's healthcare environment.

"Public awareness of genetics is still quite young," said Christy White, Principal, Cogent Research. "For the most part, people want to know their genetic makeup and what it can tell them about their predisposition to disease and how they may respond to different medications or therapies. What they fear is misuse of their genetic information by government and big business. Americans overwhelmingly want protection from that kind of abuse."

The study was conducted in January 2005 to assess public awareness, understanding, favorability towards and interest in genomics, using a web- based survey with 205 questions. The study sample was designed to be representative of the American population on several parameters, including demographics, age, education and income.

"For all of our progress in developing new diagnostics and treatments in personalized medicine, we have yet to sufficiently educate and reassure the public about the use of genetic information to improve personal health," said Edward Abrahams Ph.D., executive director of the Personalized Medicine Coalition, "There are real issues in terms of privacy and the potential for misuse of genetic information, to be sure -- but these can be managed through effective public policy, and are eclipsed by the opportunity to vastly enhance treatment outcomes in a variety of disease categories."
 Key findings from the study include:
 * Americans immediately tend to associate diet and exercise, rather than
 genetics, as key determinants of health; when prompted, however, they
 can recall that genetics contributes to disease propensity.
 * Americans have heard some information about genomics, but do not have
 in-depth knowledge of what the word means. They prefer the terms
 "genetics" and "personalized medicine" to best describe how genetics
 can affect health and healthcare options.
 * Special television segments are American's main source of information on
 genetics, yet they prefer to consult their doctors face-to-face for
 information on genetics, citing them as the most credible source of
 * Americans believe that genomics-based testing and information, for
 example through genetic counseling and genetic testing, are not
 currently in widespread use; they rarely, if ever, ask their healthcare
 provider for tests for specific genetic defects.
 * Americans value genetic information insomuch as it can detect and
 prevent disease; they are less interested in genetic information that
 will not lead to cures.
 * When asked what they thought the strongest drawback was in using genetic
 information, Americans listed "misuse of information/invasion of
 privacy" highest. "Burden of knowledge" -- the idea that genetic
 information would negatively impact their stress and anxiety levels --
 was also a listed concern. These concerns led to mixed views on the
 value of genetic information overall.
 * While Americans want government to strongly regulate privacy protection
 for genetic information, they do not want government to have access to
 the information. They want laws to protect against the reuse of DNA
 samples submitted for a specific test.
 * While Americans fear that insurance companies will use genetic
 information to deny coverage, they still want insurance companies to
 pay for the tests.
 * Americans are mostly favorable to using genetic information to predict
 their responsiveness to medications. The major concerns are a lack of
 basic education on how genes may predict drug response and that
 insurance companies might deny a patient a drug or treatment simply
 based on their genetic profile.

According to White, from 2004 to 2005, there was relatively little movement in overall awareness and support for using genetic information to affect health -- despite significant attention around the topic in the media. "The language we use to talk to the American public about genetics needs to change -- the messages are getting lost. This is evidenced by two things: the fact that there's been no change in the public's overall interest in using genetic information to better their health, and the knowledge gap that exists in the public's understanding of genetics," said White. "If we want Americans to see the potential for genetics and personalized medicine, and then adopt them as part of their healthcare regimen, we have to better educate them about how the application of genetic information in diagnostics, prevention and medicine will greatly impact both their overall health and the treatment options that are available to them."

About Cogent Research

Cogent Research is a full-service, strategic marketing research firm that provides clients with the highest quality and most innovative research design, data collection, and reporting services available in our industry today. They utilize a full range of qualitative and quantitative tools, including both traditional and emerging e-based research solutions to produce insight and to identify the strategic implications of their findings and make the results actionable.

About the Personalized Medicine Coalition

The Personalized Medicine Coalition (PMC) is a non-profit group dedicated to advancing the understanding and adoption of personalized medicine concepts and products for the ultimate benefit of patients. PMC membership encompasses a broad spectrum of academic, industrial, patient, and health care provider constituencies. For more information on the Personalized Medicine Coalition, please visit
 Megha Satyanarayana
 Feinstein Kean Healthcare
 (617) 761-6791

CONTACT: Megha Satyanarayana of Feinstein Kean Healthcare, +1-617-761- 6791,
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Date:Nov 3, 2005
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