Send message to Author

Short abstract:

Genomic data applications are rapidly expanding across different contexts in society and the boundaries between these contexts are increasingly dissolving. This paper proposes the contextual integrity framework as a way to explore the ethical issues that these dissolving boundaries raise.

Long abstract:

Genomic data plays an increasingly important role in a wide variety of contexts in society, such as 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. Bio-ethical frameworks on genomic data tend to depoliticize ethical issues, as bioethical frameworks often depart from the medical context and are often difficult to apply one-to-one on other complex domains, such as in criminal justice. This paper proposes the contextual integrity framework as a way to explore the ethical issues of these different uses of genomic data, in particular when this crosses the borders of these domains, including to the forensic setting. The contextual integrity framework is a theory rooted in information technology and big data ethics. 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 for genomic data will be discussed, including that the framework is sensitive to group interests, power structures, and commercialization issues. 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.