179972 Decision Making Under Uncertainty: A Case Study in Returning Individual Genetic Test Results in a Research Context

Sunday, October 26, 2008

Kristin Beima, BS , School of Public Health and Community Medicine, University of Washington, Seattle, WA
Catharine Riley, MPH , University of Washington School of Public Health, Seattle, WA
Jon Sharpe, MEd, MA , University of Washington, NIEHS Center for Ecogenetics & Environmental Health, University of Washington.edu, Seattle, WA
Jonathan Hofmann, MPH , Department of Epidemiology, University of Washington, Seattle, WA
Matthew Keifer, MD, MPH , Department of Environmental and Occupational Health Sciences, University of Washington, Seattle, WA
Kelly Fryer-Edwards, MA, PhD , Medical History and Ethics, University of Washington, Seattle, WA
Ecogenetics is an emerging discipline that combines information and methods from environmental health and genetics research in order to better understand variation in human responses to environmental exposures. Incomplete understanding of direct correlations between genetic polymorphisms and disease risk make it difficult to translate research results into clinical and public health practices. Current guidelines advise against returning results to individuals unless they are valid, reliable, and have clinical utility. Others argue that any known information should be shared with participants. Little is known about what research participants expect regarding genetic information of uncertain clinical significance.

We present a case study examining the impact of returned results suggesting genetic susceptibility in occupational exposure to pesticides in agricultural workers. Organophosphorus (OP) compounds are some of the most widely used pesticides in United States and are designed to kill insects that can damage fruit. Due to this toxic nature, OP compounds have the potential to cause harmful effects in humans and animals. Paraoxonase (PON1) is an important enzyme involved in the hydrolysis of OP compounds; genetic polymorphisms in the gene coding for this enzyme and level of enzyme expression are hypothesized to influence susceptibility to the toxic effects of OP exposure. Participants in this research study receive individualized results regarding their PON1 status. In our study, we explore the impact and meaning of different data points on pesticide worker behavior and understanding. We will examine ethical issues that arise when relaying uncertain genetic results and their impact on risk perception.

Learning Objectives:
Describe current policies and guidelines for returning individual genetic results Assess potential benefits to research participants and their families for engaging in ecogenetics research Identify alternative approaches to returning results and communicating research progress with participants

Keywords: Ethics, Genetics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the primary graduate student assigned to this research project.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.