What if a patient gave permission to a researcher at her local hospital to use her blood or specimen for research, and later the researcher decided to share that sample with others? What if that patient received assurances that the specimen would be used only at her local hospital? Does the researcher have an obligation to notify the patient that the sample is now going to be used by others? Should the researcher be required to get another, separate consent form from that patient?
These are some of the difficult ethical questions the University of Louisville’s Kyle Brothers, M.D., Ph.D., will tackle with a four-year, $1.7 million grant from the National Institutes of Health and its National Human Genome Research Institute. It is a clash of personal privacy concerns with the need to broaden and share the tools of research – a bioethical dilemma.
“We’re looking at the commitments researchers have made to participants and communities, and how they can keep those commitments when they share this information with others,” said Brothers who is assistant professor of pediatrics and affiliated with UofL’s Institute for Bioethics, Health Policy and Law.
Brothers is teaming with researchers at Case Western Reserve University to take a look at networks of biorepositories across the United States. Biorepositories are the facilities at universities, hospitals, laboratories and elsewhere where blood, tissue and other human specimens are frozen and stored, along with data about the donors of these samples.
Brothers’ research will focus on what policies should be in place when samples and data are shared across networks of multiple biorepositories working together.
As his research moves along, Brothers will convene a meeting with leaders in the United States biorepository field to share guidance on data access, governance and the ethical obligations to those whose specimens they have in storage.
“We’re going to be helping set best practices for biorepositories across the country,” he said.
Brothers also practices pediatric primary care with UofL Physicians-Pediatrics and serves on the ethics committee at Children’s Hospital. Along with a research focus on the ethics of genomic research, he studies the translation of genomic and other technologies into clinical care.