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Public preferences for the return of research results in genetic research: a conjoint analysis.

ABSTRACT: Recent policies specifying criteria about which individual research results to return leave considerable discretion to researchers. This study investigated the types of results that the public wants when participating in genetic research and whether preferences differ based on willingness to participate.A representative survey of US adults used conjoint analysis to measure priorities among eight principles of a results policy for a proposed large-cohort study. Policy preferences were measured using 12 tasks in which respondents chose between two groupings of the policy principles. Stratified analysis compared those self-identified as likely or unlikely to participate in genomic research.Of 1,515 respondents, 56% would participate in the proposed study. All eight principles were positively endorsed by participants (all P < 0.003), with priority placed on providing results at no cost and returning well-validated results for treatable and serious diseases. Providing detailed result reports was more highly valued than providing staff to explain results (P = 0.0005). Receiving results about major changes in risk was marginally disvalued by those unlikely to participate (P = 0.35).Public preferences for well-validated individual research results for serious, actionable diseases agree with emerging recommendations. However, because preferences for receiving individual research results vary, some choices should be offered to research participants.

SUBMITTER: Murphy Bollinger J

PROVIDER: S-EPMC4241188 | biostudies-literature | 2014 Dec

REPOSITORIES: biostudies-literature

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Public preferences for the return of research results in genetic research: a conjoint analysis.

Murphy Bollinger Juli J Bridges John F P JF Mohamed Ateesha A Kaufman David D

Genetics in medicine : official journal of the American College of Medical Genetics 20140522 12

<h4>Purpose</h4>Recent policies specifying criteria about which individual research results to return leave considerable discretion to researchers. This study investigated the types of results that the public wants when participating in genetic research and whether preferences differ based on willingness to participate.<h4>Methods</h4>A representative survey of US adults used conjoint analysis to measure priorities among eight principles of a results policy for a proposed large-cohort study. Pol ...[more]

PMID: 24854226

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Project description:BackgroundTofacitinib, an oral Janus kinase inhibitor approved for the treatment of rheumatoid arthritis (RA), provides patients with an alternative to subcutaneously or intravenously administered biologic disease-modifying antirheumatic drugs (DMARDs). Little is known about patient preference for novel RA treatments.ObjectiveTo investigate patient preferences for attributes associated with RA treatments.MethodsA choice-based conjoint survey was mailed to 1400 randomly selected commercially insured patients (aged 21-80 years) diagnosed with RA, who were continuously enrolled from May 1, 2012, through April 30, 2013, and had ≥2 medical claims for International Classification of Diseases, Ninth Revision, Clinical Modification diagnosis code 714.0 and no previous biologic DMARD use. Treatment attributes included route of administration; monthly out-of-pocket cost; frequency of administration; ability to reduce daily joint pain and swelling; likelihood of serious adverse events; improvement in the ability to perform daily tasks; and medication burden. Mean attribute importance scores were calculated after adjusting for patient demographics (eg, age, sex, years since diagnosis) using a hierarchical Bayes model. Patient preferences for each treatment attribute were ranked by the importance score. Part-worth utilities (ie, preference scores) were used to perform a conjoint market simulation.ResultsA total of 380 patients (response rate, 27.1%) returned the survey. Their mean age (± standard deviation) was 54.9 (± 9.3) years. Nonrespondents were 2 years younger (mean, 52.9 years; P = .002) but did not differ significantly from respondents in known clinical characteristics. After adjustment for demographic characteristics, mean patients' ranking of treatment attribute importance, in decreasing order, was route of administration, 34.1 (± 15.5); frequency of administration, 16.4 (± 6.8); serious adverse events, 12.0 (± 9.3); cost, 10.1 (± 6.2); medication burden, 9.8 (± 8.2); joint pain reduction, 8.9 (± 3.8); and daily tasks improvement, 8.8 (± 4.7). For the route of administration attribute, the part-worth utility was highest for the oral route. Conjoint simulation results showed that 56.4% of respondents would prefer an oral route of administration.ConclusionBased on this survey completed by 380 patients with RA, commercially insured patients with RA consider the route of administration to be the most important attribute of their RA treatment. In this study, the majority (56.4%) of patients preferred the oral route of administration over other routes. Understanding patient preferences may help to inform provider and payer decisions in treatment selection that may enhance patient adherence to therapy.

Dataset Information

Public preferences for the return of research results in genetic research: a conjoint analysis.

Publications

Public preferences for the return of research results in genetic research: a conjoint analysis.

Similar Datasets

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