The Needle in the Haystack: International Consortia and the Return of Individual Research Results
Article first published online: 15 NOV 2011
© 2011 American Society of Law, Medicine & Ethics, Inc.
The Journal of Law, Medicine & Ethics
Volume 39, Issue 4, pages 631–639, Winter 2011
How to Cite
Wallace, S. E. (2011), The Needle in the Haystack: International Consortia and the Return of Individual Research Results. The Journal of Law, Medicine & Ethics, 39: 631–639. doi: 10.1111/j.1748-720X.2011.00630.x
- Issue published online: 15 NOV 2011
- Article first published online: 15 NOV 2011
Returning individual results to participants in research studies is gaining acceptance and policy guidance is now available for investigators to develop a plan for returning results at the local level. However, returning results discovered through the work of an international scientific research consortium presents additional ethical and procedural difficulties. No general guidance is available for international consortia that wish to consider this issue, but there are examples of internal policies that are being used by consortia such as the International Cancer Genome Consortium (ICGC) and the Type 1 Diabetes Genetics Consortium (T1DGC). This paper presents the policy stance these studies have adopted regarding returning individual research results and their reasons behind it, and gives specific examples from their policy documents and project consent materials. Finally, it suggests an oversight mechanism these and other international consortia can use to ensure that this important issue is addressed appropriately.