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Table 7 Would you allow an ethics committee to decide on your behalf with whom your information will be shared, how and why?

From: Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

(n = 2005) Number of people % of responses
Yesa 980 49%
Nob 863 43%
Don’t know 162 8%
  1. Because of rounding, percentage might not add up to exactly 100%
  2. aIncludes those who responded either ‘yes, definitely’ or ‘yes, probably’
  3. bIncludes those who responded either ‘no, probably not’ or ‘no, definitely not’
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172