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Dr Angela Ballantyne
Senior Lecturer in Bioethics, Wellington School of Medicine, University of Otago Wellington, NZ |
Dr Angela Ballantyne is a Senior Lecturer in Bioethics, Wellington School of Medicine, University of Otago Wellington. She is President of the International Association of Bioethics (2016-2017) and the ethics member of the Central Ethics Committee (HDEC) NZ. In 2016 she received a NZ Marsden Fast Start grant and a UOW Award for Best Emerging Researcher. Her research interests include research ethics, exploitation, vulnerability, ethics of pregnancy and reproductive technologies, and secondary use research with clinical data. She has previously worked at the Human Genetics unit for WHO in Geneva, the Medical School at Flinders University and the Yale University Interdisciplinary Center for Bioethics.
Use of Clinical Data and Tissue for Research Purposes without Explicit Patient Consent
When and why is it ethical to use patient data and tissue samples without consent? Public sector agencies collect huge amounts of data about citizens. They are under mounting pressure to use that data to drive better, cheaper, more efficient public services, whilst protecting citizen’s privacy. This presentation focuses on health data and tissue collected for clinical purposes, and asks when these resources can ethically be used for research without explicit consent. More open access to clinical data for research has potential social value in terms of big data analytics, reproducibility of research results, comparative effectiveness studies of existing health interventions and the potential to develop a world leading learning health care system in New Zealand. But expanded access to clinical data and tissue for research is controversial because it threatens the entrenched split between research ethics and clinical ethics, as well as established assumptions about patient ownership of data and the voluntariness of research participation.
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