Disclosure of research results: a randomized study on GENEPSO-PS cohort participants.

ABSTRACT:

Background

There exist no recommendations as to how aggregate research results should best be disclosed to long-term cohort participants.

Objective

To study the impact of cohort results disclosure documents of various kinds on participants' satisfaction.

Design

Randomized study with a 2x2 factorial design.

Setting and participants

The GENEPSO-PS cohort is used to study the psychosocial characteristics and preventive behaviour of both BRCA1/2 carriers and non-carriers; 235 participants wishing to receive 'information about the survey results' answered a self-administered questionnaire.

Interventions

The impact of providing the following items in addition to a leaflet about aggregate psychosocial research results was investigated (i) an up-to-date medical

SUBMITTER: Mancini J 

PROVIDER: S-EPMC5054914 | biostudies-literature | 2016 Oct

REPOSITORIES: biostudies-literature