Researchers say gene discoveries could translate to health benefits, but consent should be updated

CHAPEL HILL Bridging the immense gap between recent impressive gene discoveries and medical scientists ability to translate that genetic information into improved health will require many studies involving large groups of participants, researchers say.

Such studies are needed to learn more about how common variations in genes interact with each other and with environmental factors such as diet and smoking to influence the risk of disease and disability.

But even before those investigations begin, health professionals need to develop better models for assuring informed consent, the researchers say. Older models usually served earlier studies well, but applying them unchanged to newer, population-based genetic research could cause significant problems.

Informed consent is the process of communicating with potential participants about the risks, benefits and alternatives associated with a research project so they can decide for themselves whether or not they would like to take part, said Laura Beskow of the University of North Carolina at Chapel Hill School of Public Health.

Much genetic research to date has focused on rare genetic mutations among families with a heavy burden of disease such as multiple family members affected with breast or ovarian cancer, Beskow said. This kind of research could uncover genetic information that has significant implications for the health of the participant and her family members and, thus, raises grave concerns about psychological and social harms.

Population-based research, however, will most often focus on interactions between common gene variations that have a much smaller influence on disease risks and their associations with environmental factors, she said. Those studies are expected to have meaningful public health implications but involve few physical psychological or social risks for individual participants.

This is because the results will have meaning at a population le

Contact: David Williamson
University of North Carolina at Chapel Hill

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