Consent, Prosent and Biomedical Data in the Era of Blockchain


12:00 - 14:00 | 30 October 2019 | Room S3, Alison Richard Building, University of Cambridge.

At this seminar in the cum panis series, Sebastian Porsdam Mann joins us to discuss some of his current research. Sebastian is is a Postdoctoral Research Fellow at Harvard Medical School’s Center for Bioethics and the University of Copenhagen, currently visiting the University of Oxford Uehiro Centre for Practical Ethics.

Abstract

Advances in medical and information technologies have led to massive increases in the volume and complexity of medical data, presenting serious problems for traditional models of specific and informed consent to medical research. However, these advances also enable novel ways to securely share and analyse data. This paper introduces one of these advances – blockchain technologies – and argues that they can be used to share medical data in a secure and auditable fashion. Many aspects of consent and data collection, as well as data analysis, can be automated using blockchain-based smart contracts. This paper demonstrates how blockchain technologies can be used to further all three of the bioethical principles underlying consent requirements: the autonomy of patients, by giving them much greater control over their data; beneficence, by greatly facilitating medical research efficiency and by reducing biases and opportunities for errors; and justice, by enabling patients with rare or underresearched conditions to pseudonomously aggregate their data for analysis. Finally, we coin and describe the novel concept of prosent, by which we mean the blockchain-enabled ability of all stakeholders in the research process to pseudonomously contact, request and exchange information with each other, thus radically enhancing the possibilities for scientific engagement.

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