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Broad consent under the GDPR: an optimistic perspective on a bright future.
1FIZ Karlsruhe - Leibniz-Institut für Informationsinfrastruktur, Hermann-von-Helmholtz-Platz 1, 76344, Eggenstein-Leopoldshafen, Germany. dara.hallinan@fiz-karlsruhe.de.
Life Sciences, Society and Policy
|January 7, 2020
Summary
Broad consent, used in genomic research, faces scrutiny under the General Data Protection Regulation (GDPR). Despite concerns from recent legal interpretations, this article argues for its continued validity and utility.
Area of Science:
- Genomic Research Ethics
- Data Privacy Law
Background:
- Broad consent is fundamental to current genomic research practices.
- The General Data Protection Regulation (GDPR) governs genomic research in the EU since May 2018.
- Recent legal interpretations of the GDPR have raised concerns about the compatibility of broad consent with the regulation.
Purpose of the Study:
- To analyze the position of broad consent under the GDPR.
- To address concerns within the genomic research community regarding GDPR's stance on broad consent.
- To provide a positive outlook on the legitimacy and utility of broad consent under the GDPR.
Main Methods:
- In-depth analysis of the GDPR's text and recent jurisprudence.
- Examination of broad consent from principled, legal-technical, and practical perspectives.
- Review of legal scholarship and case law concerning data protection in research.
Main Results:
- While GDPR text appears to support broad consent, recent jurisprudence introduces ambiguity.
- The principled, legal-technical, and practical viewpoints offer grounds for a positive assessment.
- The utility and legitimacy of broad consent can be maintained under the GDPR framework.
Conclusions:
- Broad consent remains a viable and essential practice in genomic research under the GDPR.
- A nuanced understanding of the GDPR, considering its principles and practical application, supports broad consent.
- Future genomic research can continue to leverage broad consent effectively while adhering to data protection standards.
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