. Author manuscript; available in PMC: 2016 Dec 15.

Published in final edited form as: NPJ Genom Med. 2016 Aug 17;1(1):16024-1–16024-6. doi: 10.1038/npjgenmed.2016.24

Table 2.

Genetic data: Points-to-Consider for assessing the degree of sensitivity of data on clinical, genetic conditions

Points-to-Consider
Is the genetic condition outwardly visible? How severe is it? (serious disease, penetrance, age of onset) Is it associated with what could be considered to be stigmatizing health information (e.g., associated with mental health, reproductive care, disability)? Is it familial (i.e., potential carrier status/reproductive implications for family/relatives)? Does it provide information about the likely geographical location of individuals? Does it provide information about ethnicity that may be considered potentially stigmatizing information?

Points-to-Consider

Is the genetic condition outwardly visible?
How severe is it? (serious disease, penetrance, age of onset)
Is it associated with what could be considered to be stigmatizing health information (e.g., associated with mental health, reproductive care, disability)?
Is it familial (i.e., potential carrier status/reproductive implications for family/relatives)?
Does it provide information about the likely geographical location of individuals?
Does it provide information about ethnicity that may be considered potentially stigmatizing information?