A Survey of the SWISS Researchers on the Impact of Sibling Privacy Protections on Pedigree Recruitment | Zendy

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

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A Survey of the SWISS Researchers on the Impact of Sibling Privacy Protections on Pedigree Recruitment

Author(s) -

Bradford B. Worrall,

Donna T. Chen,

Robert D. Brown,

Thomas G. Brott,

James F. Meschia

Publication year - 2005

Publication title -

neuroepidemiology

Language(s) - English

Resource type - Journals

SCImago Journal Rank - 1.217

H-Index - 87

eISSN - 1423-0208

pISSN - 0251-5350

DOI - 10.1159/000085311

Subject(s) - proband , sibling , medicine , family medicine , psychology , genetics , developmental psychology , gene , mutation , biology

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.

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