When They Hear What We Say: Ethical Challenges in Presenting Research Findings to the Huntington Disease Community

Abstract

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.

Keywords

return of research results communication of results genetic testing Huntington disease stigma intermediate alleles genetic discrimination

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