The project, Education in Genetic Ethics (EDGE) is being funded with a three-year, $1.3 million grant from The National Human Genome Research Institute of the National Institutes of Health.
“We believe this is the first project of its kind anywhere,” said Dr. Mark Rothstein, director of the Institute for Bioethics, Health Policy and Law at the University of Louisville and lead investigator for the project.
The NIH now requires researchers to certify that they have had ethics training before they can receive federal research money. However, most such training available today is “generic” and does not relate directly to a scientist’s particular area, Rothstein said.
The goal of EDGE is to develop a training program that will allow genetic researchers to apply ethical training directly to their area of work.
As a first step, the project team will conduct a national needs assessment among a large target group of academicians, clinicians, laboratory practice professionals, genetic counselors, nurses and others.
Input from these researchers will help shape the training course, along with ongoing advice from a committee of experts in the field of genetics research and education.
Once a training course is developed, it will be offered on a pilot basis to genetic researchers to evaluate its success. Ultimately, a two-day, on-site workshop will be offered at different locations throughout the United States six times a year.
The course is likely to include short instructional sessions on genetics research issues using general ethics principles, small group problem-solving and discussion sections using specially developed case studies, plenary sessions highlighting historical and developing trends in the field, and evaluation sessions to assess how much the participants have learned.
The course also will provide continuing education credit.
The University of Louisville is collaborating on the project with The Hastings Center, Stanford University and Michigan State University.