Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism
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 se...
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2019-12-01
|
| Series: | Frontiers in Genetics |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/article/10.3389/fgene.2019.01254/full |
| _version_ | 1819093061676826624 |
|---|---|
| author | Andrea Martani Lester Darryl Geneviève Christiane Pauli-Magnus Stuart McLennan Stuart McLennan Bernice Simone Elger Bernice Simone Elger |
| author_facet | Andrea Martani Lester Darryl Geneviève Christiane Pauli-Magnus Stuart McLennan Stuart McLennan Bernice Simone Elger Bernice Simone Elger |
| author_sort | Andrea Martani |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-21T23:05:32Z |
| format | Article |
| id | doaj.art-fe61b1cc6ba04ca3858c27be9bb807c0 |
| institution | Directory Open Access Journal |
| issn | 1664-8021 |
| language | English |
| last_indexed | 2024-12-21T23:05:32Z |
| publishDate | 2019-12-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Genetics |
| spelling | doaj.art-fe61b1cc6ba04ca3858c27be9bb807c02022-12-21T18:47:11ZengFrontiers Media S.A.Frontiers in Genetics1664-80212019-12-011010.3389/fgene.2019.01254497896Regulating the Secondary Use of Data for Research: Arguments Against Genetic ExceptionalismAndrea Martani0Lester Darryl Geneviève1Christiane Pauli-Magnus2Stuart McLennan3Stuart McLennan4Bernice Simone Elger5Bernice Simone Elger6Institute for Biomedical Ethics, University of Basel, Basel, SwitzerlandInstitute for Biomedical Ethics, University of Basel, Basel, SwitzerlandDepartment of Clinical Research, University and University Hospital of Basel, Basel, SwitzerlandInstitute for Biomedical Ethics, University of Basel, Basel, SwitzerlandInstitute of History and Ethics in Medicine, Technical University of Munich, Munich, GermanyInstitute for Biomedical Ethics, University of Basel, Basel, SwitzerlandUniversity Center of Legal Medicine, University of Geneva, Geneva, SwitzerlandAs 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.https://www.frontiersin.org/article/10.3389/fgene.2019.01254/fullsecondary useresearch policygenetic datagenetic exceptionalismdata protection |
| spellingShingle | Andrea Martani Lester Darryl Geneviève Christiane Pauli-Magnus Stuart McLennan Stuart McLennan Bernice Simone Elger Bernice Simone Elger Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism Frontiers in Genetics secondary use research policy genetic data genetic exceptionalism data protection |
| title | Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism |
| title_full | Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism |
| title_fullStr | Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism |
| title_full_unstemmed | Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism |
| title_short | Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism |
| title_sort | regulating the secondary use of data for research arguments against genetic exceptionalism |
| topic | secondary use research policy genetic data genetic exceptionalism data protection |
| url | https://www.frontiersin.org/article/10.3389/fgene.2019.01254/full |
| work_keys_str_mv | AT andreamartani regulatingthesecondaryuseofdataforresearchargumentsagainstgeneticexceptionalism AT lesterdarrylgenevieve regulatingthesecondaryuseofdataforresearchargumentsagainstgeneticexceptionalism AT christianepaulimagnus regulatingthesecondaryuseofdataforresearchargumentsagainstgeneticexceptionalism AT stuartmclennan regulatingthesecondaryuseofdataforresearchargumentsagainstgeneticexceptionalism AT stuartmclennan regulatingthesecondaryuseofdataforresearchargumentsagainstgeneticexceptionalism AT bernicesimoneelger regulatingthesecondaryuseofdataforresearchargumentsagainstgeneticexceptionalism AT bernicesimoneelger regulatingthesecondaryuseofdataforresearchargumentsagainstgeneticexceptionalism |