Tensions Around Ethics Review: Social Equipoise and ‘Maori Consultation’

1. Tensions Around Ethics Review:Social Equipoise and‘Maori Consultation’ Barry Smith (Te Rarawa, Ngati Kahu)Planning and Funding DivisionLakes District Health BoardRotorua Presentation to the 2012 Conference of theAustralasian Association of Bioethics and Health LawViaduct Events Centre12-14 August

2. The overriding concern? Persistent health disparity

3. The ethical concern?The issue of social equipoise Maori, due to a number of factors, are more likely to be exposed to greater risks and gain fewer benefits from research whether measured against individual participants or the communities from which participants are drawn. In any piece of research social equipoise refers to situations where there exists an equitable distribution of risks and benefits associated with different categories of participant (as opposed to different interventions).

4. New Zealand Life Expectancy Data(Source: Statistics NZ, NZ Life Tables, 2005-2007) “Encapsulating the issue”

5. Life Expectancy: Maori and Non-Maori(Source: Ministry of Social Development)

6. Adjusted and smoothed trends inamenable mortality(Source: NZ Ministry of Health, 2010)

7. Amenable Mortality Rates

8. A view from Whangatauatia overlooking the Wairoa Stream

9. “What we face”Macro barriers to reducing health inequalities • Demographic change - ageing population and cost of health care • Change in socio-political explanatory frameworks - focus on personal responsibility • Structural change in the health sector - distraction and loss of momentum • Global economic change - increasing income inequality • Political change - softening of the focus on health inequality • Health researchand ethical review process– failure to maximise health benefits

10. “What we see”Concerns with Maori consultation as expressed by the Health and Disability Ethics Committees • “Another issue of continuing concern for committee members lies with the inadequacies seen in the way applicants engage with Māori”. (Multi-region EC) • “Responses to the cultural section of the national application form for ethical approval of a research project (Section F) are often inadequate, with applicants failing to provide basic information about the relevance of studies for Māori”. (Northern X EC) • “Confusion remains over the cultural component of the ethics application, and this creates a wide variety of responses that are often less than adequate to address cultural impacts of the research on Māori…” (Northern Y EC) • “The committee has received a range of protocols that still have not consideredMāori consultation”. (Central EC) • “Another issue highlighted throughout the year was the apparent inconsistency in which Section F (Cultural and Social Responsibility) was completed by researchers”. (Upper South B EC)

11. “What we have”Issues with the correlates of ‘principalism’ in cross-cultural contexts • ‘Cultural tokenism’ and lack of ‘deep’ cultural understanding • Superficial contextual understanding – cf. “heresy of the paraphrase” • Use of ‘inappropriate’ methodologies to produce ‘un-meaningful’ results • The ‘politics of access’ – a focus on ‘data access’ not health benefits • Limited opportunities for uptake of research findings • Inadequate paradigmatic engagement

12. “Why we continue to have it”The impacts of the assumptions researchers bring to the health research ethical review process • All ethically useful concepts are independent of culture • ‘Western’ concepts, paradigms and explanations are not culturally bound • Investigating ‘lived experience’ cannot be usefully dealt with using Maori perspectives • Maori utilise ‘western’ concepts to understand the world and we are all New Zealanders after all • There is a ‘pan-Maori’ world view • If we get the cultural bits right everything else will be OK too • Thus there is minimal desire for paradigmatic/intellectual engagement

13. “What we need”Different characteristics of health research • Improved cultural and paradigmatic engagement • Informed targeting • Avoidance of ‘methodological fetishism’ • Improved researcher integrity (cf. virtue ethics?) • Better use of partnerships

14. “What we wish to understand”The nature of current engagement with Maori The Marsden Project Stage one: a survey of the 2010 applicants to HDECs focusing on their attitudes and experiences of ‘Maori consultation’ before, during and after ethics approval

15. The underlying assumption “While Māori values are acknowledged, they are not given equal weight in ethical deliberations?” (Based on:Hudson, M. & Russell, K. (2009). The Treaty of Waitangi and research ethics in Aotearoa. Journal of Bioethical Inquiry, 6(1))

16. The key questions • Is the way ECs and researchers consider Maori values conducive to cultural negotiation and critical reflection? • Does the ‘type’ of research change the nature of the consultation? • Does consultation focus on cultural issues or does it also engage around the nature of the research question? • What is perceived to be best practice regarding Maori consultation?

17. The key hypotheses • More positive consultation experiences will be associated with a greater willingness to engage with Maori in a way that potentially maximises benefits to Maori. • More positive attitudes to Maori consultation will predict both more positive perceived impacts of consultation on research and more positive behaviour toward Maori and Maori communities in the consultation process and afterwards. • The greater the degree to which the research is focused on Maori and Maori methods, the more positive the attitudes to Maori consultation and the behaviours exhibited by researchers in the Maori consultation process before, during and following data collection. • More experienced researchers will exhibit more positive attitudes to Maori consultation and will tend to engage with Maori during and after research to a greater extent than less experienced researchers.

18. “What this might mean for reducing health inequalities”Health inequalities and applying ‘mild’ ethical relativism along with the ‘meaningful engagement’ • A fuller understanding of factors contributing to health status and health inequalities • Improved insight into indigenous paradigms around health and wellbeing resulting in raised cultural credibility • Better cultural insight into the application of ethical concepts - collective versus individual consent – - ethics of dignity and maintenance of ‘mana’ – - non-physiological harm • Better alignment between ‘first and second order’ research constructs • Improved chances for the uptake of research findings • More equitable distribution of risks and benefits – i.e. the achievement of ‘social equipoise’

19. A small dose of cultural relativism! A small price paid for improved engagement?