Public preferences and the challenge to genetic research policy.

"Fiona Alice Miller, Robin Zoe Hayeems, Li Li & Jessica Peace Bytautas, What Does “Respect for Persons” Require? Attitudes and Reported Practices of Genetics Researchers in Informing Research Participants about Research , 38 J. Med. Ethics 48 (2012). Despite the apparent widespread acknowledgment of a duty to return aggregate results, “return of aggregate results is still an uncommon practice in the United States.” Lynn G. Dressler, Disclosure of Research Results from Cancer Genomic Studies: State of the Science , 15 Clinical Cancer Res. 4270 (2009)."

"46: Misha Angrist, You Never Call, You Never Write: Why the Return of “Omic” Results to Research Participants is Both a Good Idea and a Moral Imperative, 8 Per. Med. 651 (2011). In his book about the Personal Genome Project, Angrist comments, “Scientists who do human subject research spend so much time writing grants, crafting consent forms, collecting samples, experimenting on and analyzing those samples, and then looking for more, that most of us don't have a clue as to how it feels on the other end of the phlebotomist's needle.” Angrist, supra note 44, at 30."