A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada.

ABSTRACT:

Background

The highly sensitive nature of genomic and associated clinical data, coupled with the consent-related vulnerabilities of children together accentuate ethical, legal and social issues (ELSI) concerning data sharing. The Key Implications of Data Sharing (KIDS) framework was therefore developed to address a need for institutional guidance on genomic data governance but has yet to be validated among data sharing practitioners in practice settings. This study qualitatively explored areas of consensus and dissensus of the KIDS Framework from the perspectives of Canadian clinician-scientists, genomic researchers, IRB members, and pediatric ethicists.

Methods

Twelve panelists participated in a three-round online policy Delphi to determine the desirability, feasibility, re

SUBMITTER: Rahimzadeh V 

PROVIDER: S-EPMC8191056 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature