There are several features of genetic and genomic research that challenge established
norms of informed consent. In this paper, we discuss these challenges, explore specific …

Despite extensive debate, there is no consensus on whether individual genetic data should
be disclosed to research participants. The emergence of whole-genome sequencing …

In January 2009, the National Heart, Lung, and Blood Institute convened a 28-member
multidisciplinary Working Group to update the recommendations of a 2004 National Heart …

As genomic science has evolved, so have policy and practice debates about how to
describe and evaluate the ways in which genomic information is treated for individuals …

The return of individual results to research participants has been vigorously debated.
Consensus statements indicate that researchers and bioethicists consider the return of …

Background: The study identifies the experiences, preferences, and perceptions of research
participants regarding dissemination of research findings at the participant level and …

Purpose: Return of individual genetic results to research participants, including participants
in archives and biorepositories, is receiving increased attention. However, few groups have …

The rapid growth of next-generation genetic sequencing has prompted debate about the
responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to …

During the past decade, various guidelines that imply a duty for researchers to disclose
information obtained through research to participants have emerged. The character and …

There is increasing enthusiasm for genomics and its promise in advancing personalized
medicine. Genomic information has been used to personalize health care for decades …