Prof. Susan Wolf Receives Investigator Award from Robert Wood Johnson Foundation
MARCH 23, 2012—Professor Susan M. Wolf has received the Robert Wood Johnson Foundation's Investigator Award in Health Policy Research, given to support innovative projects of national policy importance. The two-year funding will support Wolf's project to write a book on "Translating Research into Health Benefits: Returning Research Results & Incidental Findings."
Wolf has been principal investigator for several projects on the controversy surrounding return of research results, funded by grants from the National Human Genome Research Institute and now the National Cancer Institute at the National Institutes of Health (NIH). The most recent project, with co-investigators Professors Frances Lawrenz and Brian Van Ness (University of Minnesota) and Professor Jeff Kahn (Johns Hopkins), has focused on how to handle individual research results that have high health importance for participants in large-scale genomic investigations.
This project has just published consensus recommendations in an article entitled "Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets" in the March 2012 online issue of Genetics in Medicine. Wolf and 25 colleagues from across the United States and Canada present the first recommendations on responsibilities for returning findings to participants in genomic research involving biobanks and archived data sets. Both Nature and Science have now posted news pieces on this article.
The authors argue that the entire biobank research system—primary researchers or collection sites, the biobank itself, and secondary researchers—has the potential of generating incidental findings and individual research results and that biobanks should assume significant responsibility for returning findings. Ten concrete recommendations are provided for addressing findings, which the article says should generally be offered to consenting contributors when the findings are analytically valid, reveal an established and substantial risk of a serious health condition, and allow action that may alter the course of the condition or its treatment.
On March 22 on Minnesota Public Radio's "The Daily Circuit," Wolf and the University of Pennsylvania's Arthur Caplan discussed biobanks and genetic researchers' responsibility to alert participants to findings that could affect their health. "It's among the biggest controversies in genetic research today," Wolf said.
Business leader and philanthropist Robert Wood Johnson started the foundation that bears his name 40 years ago to improve the health and health care of all Americans. The Investigator Awards in Health Policy Research support multidisciplinary cutting-edge studies by highly respected, ground-breaking scholars who address problems at their roots to help make a difference on the broadest scale.