Developing model biobanking consent language: what matters to prospective participants?

ABSTRACT:

Background

Efforts to improve informed consent have led to calls for providing information a reasonable person would want to have, in a way that facilitates understanding of the reasons why one might or might not want to participate. At the same time, advances in large-scale genomic research have expanded both the opportunities and the risks for participants, families, and communities. To advance the use of effective consent materials that reflect this landscape, we used empirical data to develop model consent language, as well as brief questions to assist people in thinking about their own values relative to participation.

Methods

We conducted in-person interviews to gather preliminary input on these materials from a diverse sample (n = 32) of the general population in Nash

SUBMITTER: Beskow LM 

PROVIDER: S-EPMC7227271 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature