Ethics of public and patient involvement in research: Governance, democracy and social justice

Ngā take tapatahi e pā ana ki te whaiwāhi o te iwi whānui me te tūroro ki te rangahau

Friday 15 February 2019

This course builds on the popular Introduction to Data Ethics held as part of the 2018 PHSS.

It provides a critical overview of current debates and ethical challenges regarding patient and public involvement in research (PPI), specifically in relation to biobanks and the sharing, linking and/or re-use of health-related information and data (both quantitative and qualitative).

Background:

We are witnessing significant changes in how research is done in both public and private sectors:

• Formal data and tissue repositories are increasingly in demand for research and innovation in AI, big data, learning health systems, and precision medicine.
• Major advances in IT facilitate the systematic collection, archiving and flexible re-use of large, complex data sets.
• More and more health-related data is being collected routinely from individuals via the Medical Internet of Things (MIoT).
• Commercial internet platforms allow patients to purchase genetic profiles and/or sell their data to medical researchers and companies.
• Other new trends include crowdsourcing, participatory surveillance, “citizen science”, and the “quantified self” movement (where citizens share data through mobile device-connected technologies).
• People are increasingly encouraged to be “good biocitizens” by sharing their data and DNA for the benefit of science.

These trends challenge established models of the participant-researcher relationship. They offer the chance to democratize science – handing the power back to the people. But they also risk exploiting citizens, monetarizing health data and research participation, and evading the regulatory framework for health research.

Participants will gain:

• An introduction to the new ways patients and the public are being engaged in the research enterprise – in New Zealand and overseas, in the public and private sectors.
• Understanding of the principles of effective and genuine patient engagement in health research, including Maori perspectives on research and data sovereignty.
• Practice in: identifying ethical issues in data research; analyzing ethical concepts, values and problems; and justifying conclusions.
• A chance to hear from leading experts in data/research ethics from across New Zealand, and to debate controversial questions such as:
  • Do patients have an ethical obligation to participate as research subjects?
  • Who ‘owns’ health data and genomic information?
  • When is research in the public interest?
  • Whose voices count in public engagement exercises?
  • How can we effectively address conflicts of interest in this new, complicated, and fragmented research ecosystem?
  • What are the advantages and disadvantages of empowering citizens to operate as “data traders”?
  • How are these issues addressed in the new National Ethics Standards for Health and Disability Research?

• Style of course
• Who should attend?
• Draft timetable
• Teaching staff
• Course cost and registration

Style of course

An interdisciplinary mix of presentations drawing on social sciences, ethics, philosophy, politics and law, interwoven with small group discussion and workshop activities.

Who should attend?

Anyone whose work involves research ethics, biobanks, or data-sharing, and who wants to learn more about the special ethical issues relating to research with archived data and/or bio-specimens, debates about effective patient/public involvement (PPI), and emerging trends in research using archived data and genomic material. The course will be pitched at an introductory to intermediate level, and assumes no previous formal ethics training.

Draft timetable

Teaching staff

• Dr Angela Ballantyne is an Associate Professor in Bioethics at the University of Otago, Wellington. She was president of the International Association of Bioethics (2016-2017) and is the ethics member of the Central Health and Disability Ethics Committee NZ. Angela’s research interests include exploitation, research ethics, vulnerability, ethics of pregnancy and reproductive technologies, and secondary use research with clinical data.
• Dr Maria Stubbe is an Associate Professor in research methods and primary health care, and co-directs the Applied Research on Communication in Health Group at University of Otago, Wellington. She sits on the University of Otago Human Ethics Committee (Health). Maria’s research has included machine analysis of large sets of health records and using large multimedia corpora for qualitative research and evaluation. She has a special interest in the ethical use and governance of such data sets.
• Ms June Atkinson is a senior analyst and data manager in the Department of Public Health at University of Otago, Wellington. She also manages the secure research facility at UOW connected to Statistics NZ’s Data Laboratory. June’s research interests include data linkage, data confidentiality and analysing large linked datasets.
• Ms Rochelle Style (LLBHons, MBHL) is an independent consultant in bioethics who has published on the governance of health data and research. Previously, she was a partner in Bell Gully, a leading NZ law firm. Rochelle is a past member of the CCDHB Clinical Ethics Advisory Group, and a Ministerial appointee on the Northern A Health and Disability Ethics Committee. She served on an expert Working Party to update the National Ethical Health Research guidelines (2017-2018).
• Guest speakers:
  Dr Victoria Metcalf - National Coordinator Participatory Science - Office of the Prime Minister’s Chief Science Advisor
  Associate Professor Maui Hudson - Te Pua Wānanga ki te Ao , Waikato University / Te Mana Raraunga: Māori Data Sovereignty Network

Course cost and registration

$300 early bird, $400 after 20 December 2018.

A 50% discount is available to full-time students, those unwaged and University of Otago staff.