Ethical and Legal Considerations for Pediatric Biobank Consent: Current and Future Perspectives

Abstract

Innovations in laboratory and information technologies continue to drive the expansion of pediatric biorepository research, with collections of biosamples and data continuing to grow in scale and scope. In this review, we examine the trajectory of recent developments in ethical and legal scholarship on consent to pediatric biorepository research. We focus, in particular, on issues that are likely to grow in importance in coming years, either because significant controversies remain or because they represent trends that are likely to continue into the future. Of particular interest is the evolving conception of consent as a process, the trend toward increased participant engagement and other challenges likely to raise thorny new issues in this field in the decade ahead.

Keywords::

• adolescent assent
• biorepository research
• dynamic consent
• informed consent
• parental permission
• participant engagement
• pediatrics

Financial & competing interests disclosure

This project is funded by UM1 HG007301 (HudsonAlpha Institute) and P50 HG003390 (Center for Genetic Research Ethics and Law (CGREAL)). The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Additional information

Funding

This project is funded by UM1 HG007301 (HudsonAlpha Institute) and P50 HG003390 (Center for Genetic Research Ethics and Law (CGREAL)). The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.