12- A Contextual Integrity Framework for Genomic Data

Genomic data is used in many societal contexts, such as health care, commercial DNA testing, the forensic setting, archaeological research, and genetic surveillance. Genomic information also crosses the borders of these domains, e.g. forensic use of commercial genomic data, commercial use of genomic research data, or research use of commercial genomic data. Ethical frameworks and perspectives often focus on one of these contexts. This paper seeks to broaden the bioethical debate on genomic data 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 helpful to explore and articulate a broad spectrum of ethical challenges that arise from genomic information within a variety of contexts. More specifically, 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, including that the framework is sensitive to group interests and power structures. It offers an alternative to individual consent frameworks that do not sufficiently acknowledge risks to small groups, such as Indigenous populations. The paper concludes that the contextual integrity framework helps to articulate and address a broad spectrum of ethical, social, and political factors across different societal contexts, while taking into account the interests of individuals, groups, and society at large.