Canadian Public Opinions on Genetic Privacy Issues

"Public Opinion Research Into Genetic Privacy Issues" Prepared for the Biotechnology Assistant Deputy Minister Coordinating Committee, Government of Canada, by Pollara Research and Earnscliffe Research and Communications.  Final Report issued in March 2003. (Summary in HTML or report in PDF)

Issues examined:

• general familiarity and awareness of genetic information and privacy issues;
• willingness to undergo, and experience with genetic testing;
• perceptions of the current and preferred governance models for privacy in connection with personal genetic information;
• the role of research and potential privacy constraints on its use of genetic information; and
• the degree to which insurance companies should have access to existing genetic information.

Authors describe the following three "general impressions" from the survey:

(1) Canadians have not yet engaged in any profound way in thinking about the privacy implications in the coming revolution in personal genetic information.
(2) Genetic information is generally seen in the same light as health information though many believe it to be more fundamentally personal with more worrying implications for abuse.
(3) On the whole, most people believe there are more benefits from knowing more about our genetic information than drawbacks.

Here are some of the more interesting snippets from the research article [Ed. note: This condensation is for the time-harried individuals.  I recommend reading the whole document -- only 14 pages -- in order to get more background from the authors about the stats]:

• [F]ewer than one in ten saying they were “very familiar” with the subject matter…This is one of those rare subjects in public opinion research where people truly underestimate their level of familiarity with an issue.
• 95% said they would undergo genetic testing if it would determine the best medical approach to dealing with a disease or condition they had.
• 89% said they would agree to testing to determine if there was an inherited disease they might pass on to their children.
• 58% said they would undergo testing simply to obtain more information about their own genetic characteristics.
• Almost 90% disagree with the proposition that they might not test themselves or their children because there is something “morally wrong” with genetic testing.
• Almost 80% believe government should have the right to prevent the use of genetic testing if it deems the tests’ purpose to be unethical.
• 37% would favor a ban home genetic testing kits [Ed.: Perhaps the most interesting stat of the bunch.  The brashness of such a large swath is a bit worrisome].
• 92% of Canadians agree with the proposition that it should be each person’s right to determine whether or not they have a genetic test.
• 91% do not believe that insurance companies should have the right to access existing personal genetic information. The level of opposition has increased since the question was first asked three years ago (86%.)
• 90% said employers should not have access to genetic information of applicants or employees.
• Concern about the confidentiality of personal information is high – particularly when it comes to financial (75% express some level concern) and medical (60%) information. Concern is far less prevalent about personal genetic information (47%)
• There is strong evidence from the research that an increase in knowledge about the area and discussion about it increase the conviction that the benefits of facilitating access to genetic information outweigh the drawbacks. At the end of the survey instrument – after almost 30 minutes of questioning about the issues – the question of benefits versus drawbacks was posed once again. The assessment that benefits of knowing more about our genetic information outdrew drawbacks grew from 63% to 77%.

Much of what I know about the current issues surrounding genetic privacy was gleaned from the excellent collection of papers in the book Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (Yale UP: 1997). 

March 22, 2004 | Filed Under genetic-testing, international, opinion-research, privacy | Comments Off 

Genetics and Public Policy Center Newsletter

The Genetics and Public Policy Center has published another issue (pdf) of its quarterly newsletter: e-News and Perspectives.

The newsletter mentions recent opinion research that was presented at The 59th Annual Meeting of the American Society for Reproductive Medicine: Americans Support Genetic Technologies for Healthy Babies, Not Designer Babies.  From the press release:

"New research reveals U.S. public draws clear line between acceptable and unacceptable uses of these new tools of medical science.

Americans support using reproductive genetic technologies to prevent severe disease, but they are uncomfortable with using these technologies to select socially desirable traits such as eye color, intelligence, or height, says new research into U.S. public attitudes. At the same time, most Americans feel that the decisions about any use of these technologies should rest with individuals and their families.

These were the findings of the Genetics and Public Policy Center at Johns Hopkins University and funded by The Pew Charitable Trusts, which conducted 21 focus groups in five U.S. cities to explore the public’s attitudes and beliefs on reproductive genetic technologies, including genetic testing of parents, embryos, and fetuses.

Other attitudes and beliefs of focus group participant include:

*Capricious use of technology will lead to unrealistic expectations of what it means to have a “perfect child.”

*There will be inequity in access to these technologies that will lead to greater class and racial disparities.

*The ability to prevent the birth of individuals with disease or disability will result in decreased efforts to find treatments or cures.

*Scientists do not have internally or externally imposed ethical limits on their research and thus cannot be trusted.

*Government will have a hard time enforcing regulations because people can travel outside regulated areas. Technology would go “underground,” and policies around reproduction would change significantly with White House Administrations.

*An essential role for government is to ensure the safety and efficacy of reproductive genetic technologies, monitor the outcomes, and promote equality in access to these technologies."

 

January 8, 2004 | Filed Under opinion-research | Comments Off 

Attitudes of Consumers on Genetics

CogentResearch Press Release, Americans Ready to Use Genomics to Optimize Diet And Health.  November 17, 2003.

Three-fourths of Americans are interested in obtaining their personal genetic information to identify their risk of diseases such as cancer, osteoporosis, and heart disease, and nearly half of Americans are ready to use diet-related products tailored to their health needs based upon their genetic make-up, according to a recent research study presented at the Second Annual International Nutrigenomics Conference in Amsterdam, the Netherlands.

"A survey of 1,000 Americans conducted by Cambridge-based Cogent Research, LLC, found that a majority of Americans are receptive to the idea of using genetic information to optimize health…’Americans are ready and willing to buy products based upon their genetic information, but the science is only in the early stages of being able to deliver,’ said Christy White, principal of Cogent Research. ‘The good news is consumers aren’t looking for complete diet regimens, but for individual products and basic recommendations’…

"The survey reveals that more than 90 percent of Americans are aware of the connection between diet and health, and 71 percent believe genetics play a crucial role in health throughout life. However, 73 percent are concerned about how personal genetic information would be stored and who would have access to that information. The findings are part of a broader, syndicated research study on genomics that explored solutions including pharmaceuticals, health and beauty products, and nutrition. It marks one of the largest efforts to understand consumers’ acceptance of using their DNA information to influence the balance between health and disease."

December 22, 2003 | Filed Under genetic-testing, medical-consumerism, nutritional-genomics, opinion-research | Comments Off 

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