Affordable Access

Access to the full text

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

Authors
  • Martani, Andrea1
  • Geneviève, Lester Darryl1
  • Pauli-Magnus, Christiane2
  • McLennan, Stuart1, 3
  • Elger, Bernice Simone1, 4
  • 1 Institute for Biomedical Ethics, University of Basel, Basel , (Switzerland)
  • 2 Department of Clinical Research, University and University Hospital of Basel, Basel , (Switzerland)
  • 3 Institute of History and Ethics in Medicine, Technical University of Munich, Munich , (Germany)
  • 4 University Center of Legal Medicine, University of Geneva, Geneva , (Switzerland)
Type
Published Article
Journal
Frontiers in Genetics
Publisher
Frontiers Media SA
Publication Date
Dec 20, 2019
Volume
10
Identifiers
DOI: 10.3389/fgene.2019.01254
Source
Frontiers
Keywords
Disciplines
  • Genetics
  • Policy and Practice Reviews
License
Green

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.

Report this publication

Statistics

Seen <100 times