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Ethical and legal considerations for pediatric biobank consent: current and future perspectives

Kyle B Brothers1, Aaron J Goldenberg2

  • 1Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY, USA.

Personalized Medicine
|May 15, 2018
PubMed

Insights

Pediatric biorepository research is expanding, necessitating a review of ethical and legal scholarship on consent. Future challenges include evolving consent processes and increased participant engagement.

Area of Science:

  • Biorepository research
  • Pediatric research
  • Bioethics

Background:

  • Laboratory and information technology advancements are expanding pediatric biorepository research.
  • Biorepository collections of biosamples and data are increasing in scale and scope.

Purpose of the Study:

  • To review recent ethical and legal scholarship on consent in pediatric biorepository research.
  • To identify emerging issues and future trends in consent for pediatric biorepository research.

Main Methods:

  • Literature review of ethical and legal scholarship.
  • Analysis of trends in consent for pediatric biorepository research.

Main Results:

  • Consent is increasingly viewed as an ongoing process.
  • Participant engagement in research is trending upward.
  • Significant ethical and legal controversies remain regarding consent.

Conclusions:

  • The evolving nature of consent requires ongoing ethical and legal consideration.
  • Increased participant engagement presents new challenges for pediatric biorepositories.
  • Future research must address complex issues in pediatric biorepository consent.

Keywords:
adolescent assentbiorepository researchdynamic consentinformed consentparental permissionparticipant engagementpediatrics

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