An obligation to contribute to “herd knowledge” in data linkage research?

Dr Owen Bradfield1

1University Of Melbourne, Melbourne, Australia

In today’s online world of social media, apps and smartphones, people constantly shed data and leave behind digital footprints. When individuals access health services, governments and health providers collect and store large volumes of health information about people that can later be retrieved, accessed and analysed for research purposes. This can lead to new discoveries in medicine and healthcare. In addition, when securely stored and de-identified, the privacy risks are small. In many jurisdictions, ethics committees already routinely waive the requirement for researchers to obtain consent from data subjects before using and linking these data. In this paper, I explore the ethical justification for using routinely collected health data for research without consent. I conclude that this is morally justified and that data subjects also have a moral obligation to contribute their data to such research, which would obviate the need for ethics committees to consider consent waivers. In justifying this argument, I look to vaccination ethics, the duty of easy rescue and distributive justice.


Biography:

Dr Owen Bradfield is a medical practitioner, health lawyer and researcher, who aspires to solve complex dilemmas at the intersection of medicine, ethics and the law. A graduate of Monash University’s pioneering Bachelor of Medicine/Bachelor of Surgery and Bachelor of Laws double degree programme with First Class Honours, he combines clinical practice and health law research with sessional appointments to the Suitability Panel and the Australian Institute of Health and Welfare Ethics Committees. He is also Chairperson of the Patient Review Panel. Owen’s research focuses on the ethical and legal aspects of medical regulation.

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