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Biobanking and deceased persons.

Anne Marie Tassé1

  • 1McGill University, 740, Dr Penfield Ave. suite 5202, Montreal, QC H3A 1A4, Canada. anne-marie.tasse@mcgill.ca

Human Genetics
|June 28, 2011
PubMed
Summary

This study examines ethical and legal issues in longitudinal biobanking genetic research after participant death. It reviews consent, secondary data use, and results return for deceased individuals.

Area of Science:

  • Bioethics
  • Genetics
  • Medical Law

Background:

  • Early research ethics focused on short-term studies with living participants.
  • Longitudinal population studies and biobanking introduce long-term research considerations.
  • Participant death presents novel ethical and legal challenges in research.

Purpose of the Study:

  • To provide an overview of ethical and legal issues in longitudinal biobanking genetic research concerning deceased participants.
  • To analyze frameworks for consent, secondary data use, and return of results after participant death.
  • To discuss these issues using bioethics principlism theory.

Main Methods:

  • Review of legal and ethical frameworks governing research with deceased participants.
  • Analysis of secondary data and sample use from deceased individuals.

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  • Literature review and application of bioethics principlism.

    • Main Results:

    • Identified challenges in consent post-mortem for biobanking.
    • Examined legal and ethical considerations for secondary use of deceased participants' data and samples.
    • Discussed the complexities of returning individual research results to biological families.

    Conclusions:

    • Existing ethical and legal frameworks require adaptation for longitudinal biobanking research involving deceased participants.
    • Principlism provides a useful lens for navigating complex ethical dilemmas in this research area.
    • Further discussion and policy development are needed to address the ethical implications of participant death in long-term genetic research.