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Table 1 Points to consider when sharing rare disease information

From: Epigenome data release: a participant-centered approach to privacy protection

Points to consider
1 Is the place of residence provided (even indirectly, for example, in the project name)?
2 Is the rare disease outwardly visible?
3 How rare is the disease?
4 Does the rare disease provide information about the likely geographical location of individuals?
5 Does the rare disease provide information about ethnicity that may be considered potentially stigmatizing?
6 Was the participant aware of the potential risks of data re-identification?