ArticleFrontiers in genetics2019
Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism.
Article in Frontiers in genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
What it found
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Big Data and Digitalization in Dentistry: A Systematic Review of the Ethical Issues.International journal of environmental research and public health · 2020Pooled it
- Towards responsible genome-wide screening: normative and stakeholder considerations.European journal of human genetics : EJHG · 2026Article
- Enhancing Standardized and Structured Recording by Elderly Care Physicians for Reusing Electronic Health Record Data: Interview Study.JMIR medical informatics · 2024Article
- Landscape analysis of available European data sources amenable for machine learning and recommendations on usability for rare diseases screening.Orphanet journal of rare diseases · 2024Article
- The reuse of genetic information in research and informed consent.European journal of human genetics : EJHG · 2023Article
- Health data privacy through homomorphic encryption and distributed ledger computing: an ethical-legal qualitative expert assessment study.BMC medical ethics · 2022Article
- Perceptions of pharmacogenetic exceptionalism and the implications for clinical management within an electronic health record.Clinical and translational science · 2022Article
- Open access and its potential impact on public health - A South African perspective.Frontiers in research metrics and analytics · 2022Review
- Laying the foundation for Real-world evidence studies: a case study from Newfoundland and Labrador.International journal of population data science · 2022Article
- GeneBreaker: Variant simulation to improve the diagnosis of Mendelian rare genetic diseases.Human mutation · 2021Article
- Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework.Frontiers in public health · 2021Article
- Researcher Perspectives on Data Sharing in Deep Brain Stimulation.Frontiers in human neuroscience · 2020Article
- Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland.Digital healthArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.