The article explores the confidentiality of genetic data through the lens of debates on genetic exceptionalism, focusing on whether genetic information requires a distinct protection regime compared with other forms of medical information. In classical bioethics, confidentiality is understood as the protection of a patient’s medical information within a specific clinical encounter and the restriction of its disclosure to third parties. Genomic technologies broaden this understanding: confidential information now includes not only the results of a single test, but also long-term repositories of genetic data, information about biological relatives, and data circulating among clinical, research and other digital services. The article examines confidentiality at the level of governance regimes for access, storage, sharing and secondary use of genetic data within digital ecosystems of health care, scientific research and commercial digital services. The aim of the article is to show how these debates about the exceptional nature of genetic data structure discussions of confidentiality in international and national contexts and to defend a moderate anti-exceptionalist position. This position recognises the specific features of genetic information, but argues for strengthening general safeguards for all highly sensitive data, supplementing them with targeted special measures and constraining the arbitrary expansion of state control over genetic registries.
genetic exceptionalism; genetic data; confidentiality; secondary use of data; informed consent; genetic discrimination; learning health care; protection of highly sensitive data.