How did people perceive the risks of predictive genetic testing?

Details

Interpreting genetic information in clinical settings raises moral questions about adequate risk communication and individual responsibility for health behavior. Little is known about the roles that numerical probabilities and ideas about disease and genetics play in how lay people understand predictive genetic diagnostics. This matters because their understanding of genetic risk information may have implications for patients’ responsibility for their own health.

The study examined German lay people’s attitudes and risk perceptions regarding genetic testing, with special attention to how they dealt with numerical information. Researchers conducted and analyzed seven focus group discussions with 43 lay people.

Participants showed a positive attitude toward predictive genetic testing. Four main topics emerged: non-numerical risk rather than statistical information; treatment options as a factor in risk evaluation; epistemic and aleatory uncertainty as moral criticism; and ambivalence as a sign of uncertainty.

The researchers concluded that lay people perceive risk information, including its statistical numerical component, as highly normatively charged and often as an emotionally significant threat. They suggested that lay people need a deeper understanding of risk information and the limits of genetic knowledge in relation to responsibility for their own health.