Opening the "black box" of informed consent appointments for genome sequencing: a multisite observational study.

ABSTRACT:

Purpose

Little is known about how health-care professionals communicate with patients about consenting to genome sequencing. We therefore examined what topics health-care professionals covered and what questions patients asked during consent conversations.

Methods

Twenty-one genome sequencing consent appointments were audio recorded and analyzed. Participants were 35 individuals being invited to participate in the 100,000 Genomes Project (14 participants with rare diseases, 21 relatives), and 10 health-care professionals ("consenters").

Results

Two-thirds of participants' questions were substantive (e.g., genetics and inheritance); one-third administrative (e.g., filling in the consent form). Consenters usually (19/21) emphasized participant choice about secondary fin

SUBMITTER: Sanderson SC 

PROVIDER: S-EPMC6752270 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature