Public Priorities for Individual Genetic Research Data: Results of a National Study

Large, prospective cohort studies are important research tools requiring large study populations. Whether—and to what extent—individual results are returned to genetic research participants varies in both practice and opinion and remains a subject of current debate. Our survey of 3,000 Americans assesses the public's priorities related to receiving individual research results when considering participating in such studies. Methods: An online survey of ~3,000 US adults was conducted between February and March 2011. Conjoint analysis was used to prioritize the participants' preferences for receiving individual research results that varied with respect to eight attributes: (1) whether the results were actionable; (2) whether the results would include a detailed explanation; (3) whether the results would be returned free of charge; (4) whether someone from the study would be available to discuss the results; (5) whether the results were about serious conditions; (6) whether the results were about common conditions; (7) whether the results had been confirmed in other studies; and (8) whether the results showed large changes in risk. Results/Conclusions: Data will be collected in March 2011 and fully analyzed prior to presentation in October 2011. In addition to ranking participants' overall priorities about receiving genetic research results, the data will be analyzed to identify potential subgroups of people that differ with respect to these priorities. These data may be broadly applicable to understanding which attributes of personal genetic data are most important to people seeking genetic testing.