Do patients have an ethical obligation to share their health data for research?

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Presented by Associate Professor Angela Ballantyne

Lectures, talks and seminars

Human Ethics Committee Seminar Series

21 May 2019 12:00 pm to 21 May 2019 1:00 pm

Te Toki a Rata 104 (TTR 104)

Associate Professor Angela Ballatyne (University of Otago) presents the first session in the new Human Ethics Committee Seminar Series.

The Human Ethics Committee Seminar Series aims to promote discussion around current challenges in research ethics. This lunchtime session will focus on ethical issues in the use of secondary data for research, particularly data from patients.

The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But there are recent arguments that citizens have an ethical obligation to share their health information for research purposes. Angela will argue this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit participant consent.

This means that for some studies the research ethics committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency.

Angela's argument has consequences for the considerations that the Human Ethics Committee, or the national Health and Disability Ethics Committees, should weigh when deciding whether to approve applications and under what conditions.

All are welcome, bring your lunch!

For more information contact: Isobel Cairns, Research Office

Speaker Bios

Angela teaches ethics in the Department of Primary Health Care and General Practice at the University of Otago, Wellington. She is the recipient of a Marsden Fast Start for her work on the use of secondary clinical data in research.