(Editor’s note: Here is a link to Joyce’s poster presented at ASHG.)
Genetic research often requires people willing to share their time and answer questions for the sake of scientific inquiry. Any study involving research participants should ensure that such volunteers are treated fairly and ethically. As both a research company and an advocate for personal genomics, 23andMe believes people have a right to know their genetic data and what happens to data they’ve contributed to research.
Joyce Tung, Senior Scientist at 23andMe, will be presenting a poster on this topic at the annual meeting of the American Society of Human Genetics next week. The main focus is on “return of results.” For instance, if a research study is looking at a particular genetic variant associated with higher risk for a disease, some of the research participants may want to know whether they carry that particular variant.
Only recently have studies begun to consider sharing information with participants. Doing so in a cost-effective and responsible way can be complicated; such communication not only needs to be understandable to a general audience, but also done in a way that protects people’s privacy. There might also need to be a way to update participants over time if the findings or interpretations change. 23andMe is familiar with all of these challenges.
Joyce’s poster will show how 23andMe stacks up to published recommendations related to sharing individual research results in a responsible way. Doing research on how to do research ― it may sound a bit metaphysical but the research is much needed.