One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants.

ABSTRACT: Even as debate continues about the putative obligation to proactively report genetic research results to study participants, there is an increasing need to attend to the obligations that might cascade from any initial report. We conducted an international, quasi-experimental survey of researchers involved in autism spectrum disorders (ASD) and cystic fibrosis (CF) genetics to explore perceived obligations to ensure updated information or relevant clinical care subsequent to any initial communication of research results, and factors influencing these attitudes. 5-point Likert scales of dis/agreement were analyzed using descriptive and multivariate statistics. Of the 343 respondents (44% response rate), large majorities agreed that in general and in a variety of hypothetical research context

SUBMITTER: Miller FA 

PROVIDER: S-EPMC3400736 | biostudies-literature | 2012 Aug

REPOSITORIES: biostudies-literature