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? |