An international survey of attitudes of medical geneticists toward mass screening and access to results.
A survey on mass screening was sent to 1,053 medical geneticists in 18 nations, of whom 677 responded. Three theoretical screening situations were proposed, screening in the workplace for genetic susceptibility to work-related disease, carrier screening for cystic fibrosis, and presymptomatic testing for Huntington disease. Of the respondents, 72 percent thought screening in the workplace should be voluntary, and 81 percent said employers should have no access without the worker's consent, including 22 percent who believed that employers should have no access at all. There was strong consensus in all but one nation that insurance companies should have no access to test results without the worker's consent, and strong consensus in two countries that they should have no access at all. Most (82 percent) believed that screening for cystic fibrosis should be applied to the entire population, but 18 percent believed that it should be applied primarily to Caucasians. In all, 66 percent of respondents believed that individuals at risk for Huntington disease should be told their test results only if they say that they wish to know, recognizing a "right not to know" whether they will develop the disease in later life. Twelve percent thought that spouses should have access to test results if they asked, and 26 percent thought that spouses should be informed of results even if they did not ask. Geneticists in all nations were vividly aware of the potential damage from third party access to results, especially access by insurance companies. They had little sympathy with insurers' needs to assess actuarially accurate premiums.