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Updated: Nov 2, 2025

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

Vasiliki Rahimzadeh1, Gillian Bartlett2, Bartha Maria Knoppers3

  • 1Stanford Center for Biomedical Ethics, Stanford University, 1215 Welch Rd, Stanford, CA, 94305, USA. vrahim@stanford.edu.

BMC Medical Ethics
|June 10, 2021
PubMed

Insights

The KIDS Framework offers validated best practices for sharing children's genomic data. Consensus was reached on informed consent elements, but dissensus remains on protecting de-identified data.

Area of Science:

  • Genomic Data Governance
  • Bioethics
  • Health Data Sharing

Background:

  • Sensitive genomic and clinical data, especially from children, raise significant ethical, legal, and social issues (ELSI) in data sharing.
  • The Key Implications of Data Sharing (KIDS) framework was developed for institutional guidance but lacked validation in practice.
  • This study assessed the KIDS Framework's consensus and dissensus among Canadian experts.

Purpose of the Study:

  • To validate the KIDS Framework for genomic and clinical data sharing involving children.
  • To identify areas of agreement and disagreement among key stakeholders regarding data governance practices.
  • To establish empirically supported best practices for ethical data sharing.

Main Methods:

  • A three-round online policy Delphi study involving twelve panelists.
  • Quantitative analysis of panelist ratings (mean, IQR) to determine consensus and polarity of KIDS Framework statements.
  • Qualitative content analysis of written responses to assess support and identify reasons for dissensus.

Main Results:

  • Nine original and one new statement from the KIDS Framework achieved consensus.
  • Validated statements emphasize informed consent, including realistic risk/benefit assessment and future ethics oversight for secondary data use.
  • Primary dissensus centered on appropriate protections for anonymized versus coded (de-identified) genomic data.

Conclusions:

  • The validated KIDS Framework statements offer institutions evidence-based best practices for sharing children's genomic and clinical data.
  • Further research is needed to quantify informational risks for patients and families to align data sharing policies with stakeholder priorities.
  • This study highlights the importance of stakeholder perspectives in developing robust genomic data governance frameworks.
Abstract

Keywords:
Data protectionData sharingDelphiEthics reviewGenomicsPediatrics

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