Informed consent for next-generation nucleotide sequencing studies: Aiding communication between participants and investigators.

ABSTRACT:

Introduction

Obtaining informed consent from prospective participants for research studies that include next-generation nucleotide sequencing (NGS) presents significant challenges because of the need to explain all the potential implications of participating, including the possible return of "incidental" findings, in easy-to-understand language.

Methods and results

After reviewing the consent processes at other institutions, we decided to supplement the protocol-specific informed consent form with the following: (1) a short pamphlet for the prospective participant that includes a series of questions that she or he is encouraged to ask the investigator, and (2) a more detailed companion guide for investigators to help them develop simple-language answers to the questions. Bot

SUBMITTER: Kost RG 

PROVIDER: S-EPMC5471895 | biostudies-literature | 2017 Apr

REPOSITORIES: biostudies-literature