Difficult and controversial: Informing study participants (and others) of genetic research results

http://www.ncbi.nlm.nih.gov/pubmed/22333903

Eur J Hum Genet. 2012 Feb 15. doi: 10.1038/ejhg.2012.24. [Epub ahead of print]
One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants.
Miller FA, Hayeems RZ, Li L, Bytautas JP.
Source
1] Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada [2] Joint Centre for Bioethics, University of Toronto, Toronto, Ontario, Canada.

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 contexts, research teams that report results should ensure that participants gain subsequent access to updated information (74-83%) and implicated clinical services (79-87%). At the same time, researchers perceived barriers restricting access to relevant clinical care, though this was significantly more pronounced (P<0.001) for ASD (64%) than CF (34%). In the multivariate model, endorsement of cascading obligations was positively associated with researcher characteristics (eg, clinical role/training) and attitudes (eg, perceived initial reporting obligation), and negatively associated with the initial report of less scientifically robust hypothetical results, but unaffected by perceived or hypothetical barriers to care. These results suggest that researchers strongly endorse information and care-based obligations that cascade from the initial report of research results to study participants. In addition, they raise challenging questions about how any cascading obligations are to be met, especially where access challenges are already prevalent.