Public attitudes toward ancillary information revealed by pharmacogenetic testing under limited information conditions

Abstract

Purpose: Pharmacogenetic testing can inform drug dosing and selection by aiding in estimating a patient's genetic risk of adverse response and/or failure to respond. Some pharmacogenetic tests may generate ancillary clinical information unrelated to the drug treatment question for which testing is done—an informational “side effect.” We aimed to assess public interest and concerns about pharmacogenetic tests and ancillary information.
Methods: We conducted a random-digit-dial phone survey of a sample of the US public.
Results: We achieved an overall response rate of 42% (n = 1139). When the potential for ancillary information was presented, 85% (±2.82%) of respondents expressed interest in pharmacogenetic testing, compared with 82% (±3.02%) before discussion of ancillary information. Most respondents (89% ± 2.27%) indicated that physicians should inform patients that a pharmacogenetic test may reveal ancillary risk information before testing is ordered. Respondents' interest in actually learning of the ancillary risk finding significantly differed based on disease severity, availability of an intervention, and test validity, even after adjusting for age, gender, education, and race.
Conclusion: Under the limited information conditions presented in the survey, the potential of ancillary information does not negatively impact public interest in pharmacogenetic testing. Interest in learning ancillary information is well aligned with the public's desire to be informed about potential benefits and risks before testing, promoting patient autonomy.