Ethics in a Brave New World
The privacy of health information is often regarded as a fundamental right, but what about your genetic information? "Genetic information is necessarily shared information. If you know something about me, odds are you know something about my kids and probably my parents," says bioethicist Ruth Faden. "If I have an identical twin, your information would be as definite about her as it is about me." These facts have obvious ramifications for people in terms of health insurance, employment and other areas. They also affect science itself. Consider how researchers should handle potentially negative results that impact not only a research subject, but also their first-degree relatives. "That ups the ante," says Faden, who directs the Berman Institute of Bioethics at Johns Hopkins. The Institute's Genetics and Public Policy Center educates policy leaders, decision makers and the public about ethical dimensions of emerging genetic science.
Now Comes the Hard Part
In recent decades, scientists plucked genomics's low-hanging fruit by identifying single genes that lead to specific diseases. The gene that causes cystic fibrosis was discovered in 1989. The gene for Huntington's disease, 1993... Now comes the hard part: Sorting through multiple genes and environmental interactions that control complex diseases. Like traditional epidemiologists, pioneering genetic epidemiologist Terri H. Beaty and colleagues Yin Yao and Wen Hong Linda Kao trace risk factors for disease in populations, but they specifically look at genetic variants. Their research seeks genetic links to birth defects, type 2 diabetes, chronic kidney disease, cancer, pulmonary disease and other common diseases and disorders. "We are at the point where we can look at root causes, these genetic variations at the nucleotide level," says Kao. "Through large population-based or family-based studies, we try to understand how genetic variations interact with behavioral and environmental risk factors leading to disease."
