The Working Group recognizes that many of the concerns, debates, and widely varying opinions described here are the consequence of a lack of empiric data. We recognize this critical limitation, but nonetheless determined that an initial set of recommendations was appropriate at this time. To address the issue of a lack of data, the Working Group encourages prospective research on incidental or secondary findings and the development of a voluntary national patient registry to longitudinally follow individuals and their families who receive incidental or secondary findings as part of clinical sequencing and document the benefits, harms and costs that may result.
