healthy communities mauriora! tensions around ethics review: social equipoise and maori...
DESCRIPTION
Healthy Communities – Mauriora! 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).TRANSCRIPT
Healthy Communities – Mauriora!
Tensions Around Ethics Review:Social Equipoise and‘Maori Consultation’
Presentation to the 2012 Conference of the Australasian Association of Bioethics and Health Law
Viaduct Events Centre12-14 August
Barry Smith (Te Rarawa, Ngati Kahu)
Planning and Funding DivisionLakes District Health BoardRotorua
Healthy Communities – Mauriora!
The overriding concern?
Persistent health disparity
Healthy Communities – Mauriora!
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).
Healthy Communities – Mauriora!
New Zealand Life Expectancy Data(Source: Statistics NZ, NZ Life Tables, 2005-2007)
Period Non-Maori Males
Maori Males Non-Maori Females
Maori Females
1970-72 69.1 61.0 75.2 65.0
2000-2002 77.2 69.0 81.9 73.2
2005-2007 79.0 70.4 83.0 75.1
“Encapsulating the issue”
Healthy Communities – Mauriora!
Life Expectancy: Maori and Non-Maori(Source: Ministry of Social Development)
NZ LIFE EXPECTANCY AT BIRTH BY ETHNICITY AND GENDER
65
67
69
71
73
75
77
79
81
83
85
1985-87 1990-92 1995-97 2000-02 2005-07YEARS
LIFE
EXP
ECTA
NCY
IN Y
EARS
Maori Male
Non-Maori Male
Maori Female
Non-Maori Female
Healthy Communities – Mauriora!
Adjusted and smoothed trends inamenable mortality(Source: NZ Ministry of Health, 2010)
Adjusted Amenable
0
20
40
60
80
100
120
140
1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007Year
New Zealand Australia
Age-standardised rate per 100,000
Healthy Communities – Mauriora!
Amenable Mortality Rates
SRR Maori : NonMaori
0.0
0.5
1.0
1.5
2.0
2.5
3.0
3.5
1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006Year
Male Female
Rate Ratio
Healthy Communities – Mauriora!
A view from Whangatauatia overlooking the Wairoa Stream
Healthy Communities – Mauriora!
“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 research and ethical review process– failure to maximise health benefits
Healthy Communities – Mauriora!
“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 considered Māori 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)
Healthy Communities – Mauriora!
“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
Healthy Communities – Mauriora!
“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
Healthy Communities – Mauriora!
“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
Healthy Communities – Mauriora!
“What we wish to understand”The nature of current engagement with Maori
The Marsden ProjectStage one: a survey of the 2010 applicants to HDECs focusing on their attitudes and experiences of ‘Maori consultation’ before, during and after ethics approval
Healthy Communities – Mauriora!
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))
Healthy Communities – Mauriora!
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?
Healthy Communities – Mauriora!
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.
Healthy Communities – Mauriora!
“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’
Healthy Communities – Mauriora!
A small dose of cultural relativism!
A small price paid for improved engagement?