July 11, 2017
Kass says she makes that bold statement deliberately and with humility, because she chairs the institutional review board (IRB) for the project, which aims to create a million-person cohort. “When the government does science on its own people, participant welfare and trust are essential and we may not get second chances,” she said. The promises made must be upheld, she added, and the National Institutes of Health (NIH) is making plenty of promises about issues such as diversity, transparency and ongoing engagement with communities.
Kass was speaking July 7 to an online meeting of the NIH Health Care Systems Research Collaboratory, which aims to improve the way clinical trials are conducted by creating a new infrastructure for collaborative research with healthcare systems.
The idea behind All of Us is that it provides resource efficiency because researchers do not have to recreate a cohort every time a new question comes up, which is how research is done now. Researchers can instead ask questions of a single huge cohort. The size also means people with rare conditions or circumstances are gathered in one place. “The ethical stakes are really high,” Kass said.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.