Team Wins National Grant to Study Ethics of Sharing Genetic Test Results with Relatives

B. KOENIG            
B. Koenig, photo

A team of researchers, Gloria Petersen, Ph.D., of Mayo Clinic, Barbara Koenig, Ph.D., of the University of California, San Francisco (UCSF), and Susan Wolf, J.D., of the University of Minnesota, have received a five-year, $2.5 million grant from the National Cancer Institute and the National Human Genome Research Institute to study the ethical and legal implications of providing genetic research results, such as DNA test results, from tissue donated to research bio banks to relatives of the donor.

“Substantial debate surrounds the question of whether researchers have an ethical obligation to return individual research results to genetic relatives of patients, especially when the patient has died, and incidental findings have potential health or reproductive importance for kin,” says Dr. Petersen, the Purvis and Roberta Tabor Professor at Mayo Clinic. “Establishing best practices for navigating this issue is becoming increasingly important as bio banks all over the world are archiving genetic data and making those data available for secondary analyses, often years after the DNA was donated.”

The study will examine family preferences, produce a detailed analysis of the legal and ethical issues involved, and offer recommendations for best practices.

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