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

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The overriding concern?

Persistent health disparity

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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).

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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”

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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

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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

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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

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A view from Whangatauatia overlooking the Wairoa Stream

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“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

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“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)

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“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

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“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

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“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

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“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

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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))

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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?

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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.

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“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’

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A small dose of cultural relativism!

A small price paid for improved engagement?