He kuhunga ki ngā tikanga matatika raraunga
Tuesday 13 February 2018
This program is aimed at anyone working with data or in data policy who wants to learn more about the special ethical issues relating to data and to become more familiar with emerging data ethics governance frameworks and concepts.
The focus will primarily be on the use of public, or administrative, data, rather than private data; but the boundaries between these two categories are collapsing and the discussion will acknowledge this. We will concentrate primarily on data use for research and program evaluation, but data use for operational purposes may be discussed where relevant. The main focus is on health data, though we will also touch on other types of data.
Participants will gain:
- An introduction to the complex data ecosystem in New Zealand
- The chance to learn from leading experts in data ethics from four New Zealand universities
- Understanding of the ethical, social and cultural licence challenges in relation to data use
- Practice in identifying ethical issues in data research; analysing ethical concepts, values and problems; and justifying conclusions regarding appropriate data use
- A kaupapa Māori perspective on data governance
- An understanding of the current diverse systems of ethics review and data governance and future challenges in this space
Dr Angela Ballantyne, Dr Maria Stubbe and Ms June Atkinson are co-convening the course.
Specific ethical issues to be covered include:
- the role of individual consent in relation to data use;
- trust and transparency;
- using data for the public good (human flourishing);
- Māori data sovereignty;
- stigmatization and profiling of groups;
- collective versus individual interests in data;
- models for data governance;
- posthumous use of data;
- and the social and cultural licence for data use.
The course will not present a comprehensive analysis of the law regarding data access and use in New Zealand.
Small group – teaching and discussions in a group of up to 30 people.
The material will be pitched at an introductory to intermediate level, and no previous formal ethics training will be assumed. Participants will need to have some experience of working with data, data policy, or data governance, and some familiarity with the data ecosystem in New Zealand will be assumed. The course will be relevant for academic researchers working with data; policy and research advisors who access data in the course of their work; data analysts and their managers.
|9am||1. Introduction and overview |
- Introduction to data ethics – control, consent and transparency
- Data vignette case study for discussion – where does my health data end up?
|11am||2. Research ethics and governance panel discussion |
- The MSD PHRaE Framework
- Health and Disability Ethics Committees
- Institutional Ethics and Data Access committees
Tim Dare (University of Auckland)
|1:30pm||3. Māori Data Sovereignty |
- Interactive case study
4. Posthumous data
5. Wrap up and reflections
|Jon Cornwell (Victoria University of Wellington)|
- Dr Angela Ballantyne is a senior lecturer 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 a senior lecturer in research methods and primary health care, and co-directs the Applied Research on Communication in Health Group at University of Otago, Wellington. She is a member of the University of Otago Human Ethics Committee (Health). Maria’s research has included analyses of large sets of confidential health records and video-recorded health interactions. 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 and 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.
- Dr Jon Cornwall is a Senior Lecturer in the Faculty of Health at Victoria University of Wellington. He has research streams that embrace both the basic biological sciences (muscle biology) and bioethics, with a specific interest in the ethics and management of posthumous human assets. This includes body donation, organ donation, and posthumous data such as healthcare data. He is a member of the Federative International Committee for Ethics in the Medical Humanities, the governing body which oversees the development and delivery of the World Body Donation Guidelines.
- Associate Professor Maui Hudson is an interdisciplinary researcher based in the Faculty of Maori and Indigenous Studies at the University of Waikato. He affiliates to the Iwi of Whakatohea, Ngaruahine and Te Mahurehure. Maui is a foundation member of Te Mana Raraunga Maori Data Sovereignty Network and a co-convener of the Summer Internship for Indigenous Genomics (SING-Aotearoa) initiative.
- Tim Dare is an Associate Professor of Philosophy at the University of Auckland. He is also a lawyer and former research clerk to the New Zealand High Court. He is the author of The Counsel of Rogues? A Defence of the Standard Conception of the Lawyer's Role (Routledge, 2016), co-editor of Professional Ethics and Personal Integrity (2010), and the author of many articles and book chapters in the philosophy of law and applied and professional ethics, including pieces on vaccination, parental rights to consent to their children’s medical treatment, oncologists’ views about giving information about unfunded treatments beyond the means of their patients, and Harper Lee’s To Kill a Mockingbird. Since about 2012, he has worked on the ethics of predictive risk modelling in social policy contexts. He currently has a one day a week job as a data ethics advisor to the Ministry of Social Development.
$300 early bird, $400 after 20 December 2017.
A 50% discount is available to full-time students, those unwaged and University of Otago staff.