Date: Wednesday, 10 May 2023, 13:30 – 14:30
Venue: Oxford Uehiro Centre, Suite 1 Littlegate House, 16-17 St Ebbe’s Street, Oxford OX1 1PT (buzzer 1)
Speaker: Nina de Groot (OUC Student Visitor; Vrije Universiteit Amsterdam)
Title: Genetic Information Across Society and the Limits of Consent – What Bioethics can learn from Big Data ethics
Abstract: Modern genetics involves genetic data that is generated, processed and analysed at an increasingly rapid pace. Moreover, genetic information is not limited to the medical context, but plays an important role in other contexts in society, such as commercial DNA testing, the forensic setting, archaeological research, genetic surveillance, and so on. Genetic information also crosses the borders of these domains, e.g. forensic use of medical genetic information, insurance use of medical genetic information, or research use of commercial genetic data. Meanwhile, when it comes to genetic information, the bioethical debate tends to predominantly focus on the medical setting. This paper aims (1) to argue that an informed consent approach for genetic information has limitations in many societal contexts, and (2) to broaden the bioethical debate on genetic information by suggesting an approach that is applicable across multiple societal contexts. I argue that the contextual integrity framework, a theory rooted in information technology and big data ethics, is an effective tool to explore ethical challenges that arise from genetic information within a variety of different contexts. Rather than focusing on individual control over information, the contextual integrity approach holds that information should be shared and protected according to the norms that govern certain distinct social contexts. Several advantages of this contextual integrity approach will be discussed. The paper concludes that the contextual integrity framework helps to articulate and address a broad spectrum of ethical, social, and political factors in a variety of different societal contexts, while giving consideration to the interests of individuals, groups, and society at large.
Booking: not required (Zoom link available on request).