GE3LS – Communication of Genetic Research Results to Research Participants

Autism Genome Project – Integrated GE3LS Research

GE3LS sub-project leader: Fiona Miller, University of Toronto

Project Summary
Autism, a severe neurodevelopmental disorder affecting thousands of Canadians, is characterized by impairments in social communication and a preference for repetitive activities.  In an effort to more fully elucidate the genetic basis of autism, this unprecedented initiative, led by Dr. Steve Scherer, brings together 170 researchers from around the world, including leading clinicians, geneticists, and genome scientists, to screen for autism susceptibility genes in over 6000 individuals from 1600 families.

GE3LS research summary
Genomic research on the autism spectrum disorders (ASD) raises a number of social and ethical issues. These include issues in human subjects research more generally, and in the ethics of research on a medically and social complex child-onset disorder more specifically.

Most of our research has concerned the issue of communicating genetic research results to research participants. Recent commentaries argue that researchers bear an obligation to report genetic research findings to study participants. Others contend that while the principles of respect for persons, reciprocity, and beneficence indeed apply to the research context, they may neither be well served if results are disclosed nor denied if they are not disclosed. This issue is particularly challenging in the context of autism genomics, given the intensity of the relationship between researchers and the participant community, the complexity of the scientific information generated, and the multifaceted ways in which this information may be interpreted and used by research participants and families. The communication of genetic research results also bears on issues of health and social service delivery, and the extent to which research can or should serve a compensatory function.

We have pursued research on these issues through a review of relevant sub-national, national and supra-national policy guidance, and a set of qualitative interviews with researchers and research participants. We are currently mounting a survey of ASD genomics researchers using an experimental design, to understand the myriad factors influencing professional judgments regarding the disclosure of genetic research results.