A survey of the SWISS researchers on the impact of sibling privacy protections on pedigree recruitment

Bradford B. Worrall, Donna T. Chen, Robert D. Brown, Thomas G. Brott, James F. Meschia

Research output: Contribution to journalArticlepeer-review

4 Scopus citations

Abstract

To understand the perceptions and attitudes about privacy safeguards in research and investigate the impact of letter-based proband-initiated contact on recruitment, we surveyed researchers in the Siblings With Ischemic Stroke Study (SWISS). All 49 actively recruiting sites provided at least 1 response, and 61% reported that potential probands were enthusiastic. Although 66% of researchers valued proband-initiated contact, only 23% said that probands viewed this strategy as important to protecting the privacy of siblings. A substantial minority of researchers (37%) said the strategy impeded enrollment, and 44% said it was overly burdensome to probands.

Original languageEnglish (US)
Pages (from-to)32-41
Number of pages10
JournalNeuroepidemiology
Volume25
Issue number1
DOIs
StatePublished - Jun 2005

Keywords

  • Ethics
  • Genetic research
  • Pedigree
  • Stroke

ASJC Scopus subject areas

  • Epidemiology
  • Clinical Neurology

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