Abstract
As accessing, collecting, and storing personal information become increasingly easier, the secondary use of data has the potential to make healthcare research more cost and time effective. The widespread reuse of data, however, raises important ethical and policy issues, especially because of the sensitive nature of genetic and health-related information. Regulation is thus crucial to determine the conditions upon which data can be reused. In this respect, the question emerges whether it is appropriate to endorse genetic exceptionalism and grant genetic data an exceptional status with respect to secondary use requirements. Using Swiss law as a case study, it is argued that genetic exceptionalism in secondary use regulation is not justified for three reasons. First, although genetic data have particular features, also other non-genetic data can be extremely sensitive. Second, having different regulatory requirements depending on the nature of data hinders the creation of comprehensible consent forms. Third, empirical evidence about public preferences concerning data reuse suggests that exceptional protection for genetic data alone is not justified. In this sense, it is claimed that regulation concerning data reuse should treat genetic data as important, but not exceptional.
Highlights
The considerable potential that the extensive use of data in the medical field can disclose has been extensively discussed (Costa, 2014)
Designing a supportive normative framework for the reuse of data is of crucial importance for the development of a successful interaction of research and clinical care
The example of Switzerland suggests that granting genetic data an exceptionally special status does not provide a satisfactory policy choice to this aim
Summary
The considerable potential that the extensive use of data in the medical field can disclose has been extensively discussed (Costa, 2014). Can data be exploited at an individual level to accurately implement personalised medicine (Meier-Abt et al, 2018), but it can be extremely useful at a societal level to help develop costefficient healthcare policies and carry out clinical and public health research (Dugas et al, 2013). Alongside with many expected beneficial impacts, the full deployment of data in the healthcare sector raises challenging legal and ethical questions. A great deal of these is related to the high mobility and interconnectivity of information which the big data era has brought about (Mittelstadt and Floridi, 2016). It becomes crucial to combine the pervasive and beneficial use of data with efficacious safeguards capable of protecting sensitive personal data, such as genetic and non-genetic health data (Jensen et al, 2012)
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