Pew Funds Genetics and Public Policy Center's New Consumer Genetics Project
The Pew Charitable Trust has awarded $750,000 to the Genetics and Public Policy Center for a new project focused on consumer protections for applications of genetic testing.
Results
Benefits and burdens
The moderator asked participants first to consider the potential benefits and drawbacks of the study. Improved prevention of and treatments for disease came up frequently, as did identifying environmental or lifestyle factors that could lead to longer, healthier lives. Some participants surmised that the study would lead to a reduction in health care costs. Disease prevention and/or treatment was voted the most important benefit in all of the town halls.
Either loss of privacy, or the possibility that insurance companies might obtain individuals’ genetic information and use it against them, ranked as the most significant concern about the study in every town hall except for Jackson’s. Topping the list in Jackson was the potential that the study’s findings could be used for genetic manipulation in the future. Participants cited the cost of the study as a burden; a few also mentioned the cost to companies should their products (e.g., plastic) be found to be harmful to human health. During the benefits and burdens discussion and at other points during the town halls, participants frequently expressed concern that pharmaceutical or other companies might profit off of the taxpayer-funded proposed study. “They may produce drugs that are so expensive that most people couldn’t afford them,” said one participant.
A less-frequently-voiced – but still fairly common – concern was that the results would be used by law enforcement or for various nefarious purposes: “Even though you’re a number, you’re still putting yourself at potential risk for this knowledge to be out among the folks to use for not curing diseases, but for perhaps engineering different diseases to wipe out populations.”
Acceptable and unacceptable types of research
Participants were asked to consider what types of research should and should not be done with the information collected by the proposed study. Research aimed at curing disease was commonly cited as acceptable, and some participants named conditions such as cancer, birth defects, and diabetes. Some suggested that diseases affecting large numbers of people should be the highest priority. Identifying environmental factors that cause disease came up several times.
Human cloning was cited in every town hall as an unacceptable use of the proposed biobank, although in one case participants differentiated between reproductive cloning (unacceptable) and cloning aimed at regenerating organs or otherwise curing disease (acceptable). Participants frequently named research aimed at altering humans or creating “designer babies” as unacceptable. Another area of concern was “things that point out differences between gender, or race, or anything like that that people use to discriminate.” Other areas mentioned included weapons development, intelligence, alcoholism, and sexual orientation.
Read Full Section: Results (PDF)
