Ethical and methodological issues in pedigree stroke research

Bradford Burke Worrall, Donna T. Chen, James F. Meschia

Research output: Contribution to journalArticle

25 Scopus citations

Abstract

Background - Stroke is a complex genetic disorder with a variable phenotype. Investigations of heritable factors in complex genetic disorders use pedigree and genetic techniques, which pose different ethical and methodological challenges than those routinely encountered in therapeutic research. Building consensus on acceptable research practices in this field is vital to the success of multicentered collaborations. Summary of Review - We review important ethical and methodological concerns related to the collection, storage, and release of pedigree research information, The human studies aspects of pedigree research are complicated methodologically because individuals can be active or passive participants and pedigrees can be proband derived, partially validated, or fully validated. Current research ethics frameworks do not work well outside of a dyadic researcher-subject relationship. Privacy and confidentiality for family members must be considered in pedigree research, Investigators should anticipate potential conflicts of interest among family members when designing a pedigree research protocol. Conclusions - We propose a "proband-initiated contact" methodology in which the proband or the proband's designate allows identification of potential families without breaching the privacy of individuals in the family. In situations in which family history data are collected without direct contact between researchers and individuals in the proband's family, an Institutional Review Board may waive consent by family members after appropriate review of the protocol and application of rules for granting waivers of consent. Certificates of Confidentiality should be considered.

Original languageEnglish (US)
Pages (from-to)1242-1249
Number of pages8
JournalStroke
Volume32
Issue number6
DOIs
StatePublished - Jan 1 2001

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Keywords

  • Ethics, medical
  • Family
  • Patient selection
  • Pedigree
  • Stroke

ASJC Scopus subject areas

  • Clinical Neurology
  • Cardiology and Cardiovascular Medicine
  • Advanced and Specialized Nursing

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