NEW YORK (GenomeWeb News) – A group of researchers will use a $2.5 million federal grant to study the ethical and legal implications of providing genetic research results to the relatives of people who donated samples to biobanks, Mayo Clinic said today.
The grant from the National Cancer Institute and the National Human Genome Research Institute will fund researchers at Mayo, the University of California, San Francisco, and the University of Minnesota who will study what families prefer, will analyze the legal and ethical issues, and propose recommendations for best practices policies.
"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," Gloria Petersen, the Purvis and Roberta Tabor Professor at Mayo Clinic, said in a statement.
"Establishing best practices for navigating this issue is becoming increasingly important as biobanks all over the world are archiving genetic data and making those data available for secondary analyses, often years after the DNA was donated," Petersen said.
Petersen said that genetic information from biosamples can be used for research purposes for a very long time, even long after the donor is deceased, and can provide valuable information to the rest of their families.
"This genetic information could actually have tremendous relevance for their children, and their brothers and sisters," she said. "We seek to understand how best to tell the family members who could be affected by research findings when the family members themselves were not the research subject – the person who is now deceased is."
Petersen said the researchers plan to use surveys and interviews with people who may be affected by such policies, analyze the results, discuss the ethical and legal issues, and then will develop the recommendations within the next three to four years.