Enrolment by surrogate authorisation into stroke genetic research

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

Research output: Contribution to journalArticle

Abstract

Continued clinical and translational research is necessary to address unmet clinical needs in stroke and cerebrovascular disease. Ethical and scientific challenges confront these research efforts. Genetic stroke research faces a number of specific challenges related to the legacy of genetic exceptionalism and the reality that stroke frequently impairs decision-making capacity. Maximising scientific rigour and protecting human subjects have frequently and often erroneously been cast as opposing efforts. In this article, we review the challenges facing stroke genetic research and propose potential approaches given the current state of guidance and regulations. We consider the rationale behind including those with decisional impairment and several options to allow participation of these individuals. Appropriate infrastructure and processes should be established to ensure that genetic information poses minimal risk to individuals, just as has been done to minimise physical risk in non-therapeutic research.

Original languageEnglish (US)
Number of pages1
JournalEuropean Neurological Review
Volume4
Issue number1
DOIs
StatePublished - Dec 2009

Keywords

  • Decisional incapacity
  • Informed consent
  • Research ethics
  • Stroke genetic research
  • Surrogate consent

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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