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

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

Research output: Contribution to journalArticle

4 Citations (Scopus)

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

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Privacy
Pedigree
Siblings
Stroke
Research Personnel
Research
Surveys and Questionnaires

Keywords

  • Ethics
  • Genetic research
  • Pedigree
  • Stroke

ASJC Scopus subject areas

  • Epidemiology
  • Clinical Neurology

Cite this

A survey of the SWISS researchers on the impact of sibling privacy protections on pedigree recruitment. / Worrall, Bradford B.; Chen, Donna T.; Brown, Robert D Jr.; Brott, Thomas G; Meschia, James F.

In: Neuroepidemiology, Vol. 25, No. 1, 06.2005, p. 32-41.

Research output: Contribution to journalArticle

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