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). 

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