Naked bodies, naked genomes: the special (but not exceptional) nature of genomic information

Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults: A Qualitative Study

“…It seems understandable that part of the group perceives a difference between the two: although health and genetic data are sensitive, private and should be protected, many participants of the study, as well as previous investigations [48-50], described a difference between health data such as blood marker levels as compared to genomic test results. Aspects contributing to the perception that genomic information is of a special nature include the large quantity of information resulting from genetic tests, the predictive potential of genetic information, the rather frightening certainty about the connection to ancestors and relatives, and the conditional probability resulting in psychological distress or potential discrimination.…”

“…Aspects contributing to the perception that genomic information is of a special nature include the large quantity of information resulting from genetic tests, the predictive potential of genetic information, the rather frightening certainty about the connection to ancestors and relatives, and the conditional probability resulting in psychological distress or potential discrimination. All forms of privacy need to be protected, but some intimate aspects of our lives need special respect [50]. As a result, it might be reasonable to mandate special considerations in terms of privacy protection and regulation of access of genetic information and practice to a certain extent: “genetic exceptionalism” [48, 49].…”

Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

“…Others contend that features of genetic information are shared with characteristics such as socio-economic status, HIV status or family history [9]. They suggest that DNA can be seen as distinct and as warranting a special respect for privacy, without legal or regulatory protection beyond that accorded to other sensitive information [10].…”

Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism

“…Therefore, from the perspective of data subjects' privacy, it would seem more appropriate that a distinction (if any) in regulatory requirements for secondary use were based on the degree of sensitiveness of personal data, or simply on the degree of de-identification, rather than on the genetic or non-genetic nature of the data themselves. As it has been argued, the fact that genetic data are qualitatively different does not per se justify exceptional protection, since all data subjects' information deserves in principle privacy protection (Sulmasy, 2015). The type and nature of the data is undoubtedly an important element to determine whether special protection should be granted.…”