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

Neuroepidemiology. 2005;25(1):32-41. doi: 10.1159/000085311. Epub 2005 Apr 25.

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Attitude of Health Personnel*
  • Brain Ischemia / genetics
  • Canada
  • Genetic Privacy / psychology*
  • Humans
  • Patient Selection*
  • Pedigree*
  • Research Personnel / psychology*
  • Siblings*
  • Stroke / genetics
  • United States