Respecting patients' autonomy is increasingly important in the digital age, yet researchers have raised concerns over the barriers of access to medical data useful for data-driven medical research.
Respecting patients and their autonomy, a primary obligation of medical professionals, is increasingly important in the digital age. Yet biomedical and bioethical researchers have raised concerns over the barriers of access to previously stored medical data useful for epidemiological and other data-driven medical research. These barriers were introduced to protect the privacy and autonomy of patients but have had the unintended consequence of widespread and often severe selection bias, undermining research quality. This talk introduces novel advances in computer science and cryptography, notably blockchain, as a proposed solution to the dilemmas raised by consent requirements to retroactive epidemiological research. It describes how these technologies can be used to reduce or eliminate data breach risks as well as radically enhance control over medical data for those who possess it. Ethics and the law of most nations allow for consent waivers for research with minimal risk. If implemented properly, blockchain- and smart-contract based tools could reduce the privacy risk of most, if not all, records-based research to minimal, thus potentially freeing up the legislative space for a large-scale facilitation of records-based research. Importantly, the technology described in this talk could also be used to radically enhance the control that individuals and other data owners have over their pseudonymous medical data. These insights are critical to the increasingly important policy issues concerning access to, and control over, biomedical data.
These affordances of novel technologies should be widely discussed in the medical and policy professions to ensure that they are used for the furtherance of ethical principles. This talk aims to open preliminary discussion on these topics.