Bombard Yvonne, Cox Susan M, Semaka Alicia
Department of Health Policy Management and Evaluation, University of Toronto, Ontario, Canada.
J Empir Res Hum Res Ethics. 2011 Sep;6(3):47-54. doi: 10.1525/jer.2011.6.3.47.
Sharing findings with the Huntington disease (HD) community and other genetic disease communities is challenging because of the sensitivity involved in effectively communicating findings to participants. We describe our experiences of presenting multi-disciplinary research findings to the HD community, and discuss the need to: (1) balance potential benefits and harms for participants, researchers, and others; (2) demonstrate respect for participants' needs, expectations, and priorities; and (3) ensure transparency and respect for autonomy.
