Genetic research studies and related biorepositories are chockfull of DNA information that may not only help researchers understand a particular disease being studied like, for example, pancreatic cancer, they may also shed light on other as conditions the research participant may be at risk for. Further, while research participants can, for some studies, indicate whether they want genetic information returned to them, the situation becomes even less clear when that participant dies, Science's Jennifer Couzin-Frankel says.
"Think of all the biorepositories sitting around with information, and their source individuals are dead or dying," says Susan Wolf, a law professor and bioethicist at the University of Minnesota, Twin Cities, tells Science. "We're talking about medical information of potential significance to survivors."
Couzin-Frankel notes that some institutions are starting to think ahead. For instance, she reports that Memorial Sloan-Kettering Cancer Center as well as a coalition of Dutch cancer centers are asking participants who should receive their results in case of their death while the ClinSeq study is turning to the executors of deceased participants' estates to decide what to do.