Rapid advances in genetic research have increased focus on the ethical obligations of researchers to disclose genetic research results to participants when this information is of potential clinical and/or personal significance. Numerous ethicists have developed guidelines that address the following question: under what conditions do researchers have a “duty to recontact” participants whose genetic research results may have new meaning with the advancement of scientific and medical knowledge? Although the bioethics literature has provided frameworks to guide genetics researchers who might consider returning individual research results to study participants, the scientific literature is remarkably scarce. Limited studies have been performed where returning genetic test results to participants has been carried out and carefully evaluated.
In order to better understand how, when, and if to return individual genetic research results to participants, we need clinical research that explores the impact of genetic risk disclosure protocols in regards to decision-making, comprehension of genetic information, psychological well-being, subsequent health behaviors, and financial costs associated with disclosure. The goal of this project is to develop and evaluate a protocol for returning genetic research results to participants of a large, international, population-based study on melanoma susceptibility.
The Recontact Study is funded by the University of Michigan Comprehensive Cancer Center, and the University of Michigan Office of the Vice President for Research.