Broad consent under the GDPR: an optimistic perspective on a bright future.

Author information

1: FIZ Karlsruhe - Leibniz-Institut für Informationsinfrastruktur, Hermann-von-Helmholtz-Platz 1, 76344, Eggenstein-Leopoldshafen, Germany. dara.hallinan@fiz-karlsruhe.de.

Abstract

Broad consent - the act of gaining one consent for multiple potential future research projects - sits at the core of much current genomic research practice. Since the 25th May 2018, the General Data Protection Regulation (GDPR) has applied as valid law concerning genomic research in the EU and now occupies a dominant position in the legal landscape. Yet, the position of the GDPR concerning broad consent has recently been cause for concern in the genomic research community. Whilst the text of the GDPR apparently supports the practice, recent jurisprudence contains language which is decidedly less positive. This article takes an in-depth look at the situation concerning broad consent under the GDPR and - despite the understandable concern flowing from recent jurisprudence - offers a positive outlook. This positive outlook is argued from three perspectives, each of which is significant in defining the current, and ongoing, legitimacy and utility of broad consent under the GDPR: the principled, the legal technical, and the practical.

KEYWORDS:

Biobank; Broad consent; Consent; Data protection law; General data protection regulation; Genetics; Genomic research; Genomics; Medical research; Privacy law