Important Ethical and Genetic issues for Maori Flashcards
CELSI
Cultural Ethical Legal Social Implications of (clinical) Research
-taking samples from people
Genetic and Ethical Issues for Importance for Maori
Health inequalities Treaty of Waitangi Maori ethical frameworks Cultural safety Maori Health Models *Maori ethical frameworks CQ (Cultural Intelligence. Efficacy of having knowledge) * Maori views on genomics and biobanking * Implications for clinical practice & community decision-making
Key events in Indigenous ‘Gene’ research
-which shape people’s impression of Gene research and whether or not they will get involved
Human Genome Project, Human Genome Diversity Project, Genographic Project Adrenoleukodystrophy (ALD) - whanau Stomach Cancer - whanau Genetics of Gout - iwi ‘Warrior’ Gene (MAO-A30bp-rpt) - Maori Research with Hagahai - Indigenous Research with Havasupai - Indigenous
Efficacy vs Effectiveness
Efficacy good in lab as have control
Need to be Effective in real world
-emotion and cultural intelligence
-may have all info, but wont be as effective if cant get it through to your patients/interact
-Culture is really important in context of how they operate (e.g. in research)
“science happens in the context of society, communities and culture)
CULTURE: THE SILENT LANGUAGE GENETICISTS MUST LEARN - GENETIC RESEARCH WITH INDIGENOUS POPULATIONS
- Culture is really important in context of how they operate (e.g. in research)
- opportunities for *cultural misunderstanding have grown… the cultural perspective of the researchers, and their more powerful cultural position in society, has prevented them from fully considering the *priorities of the study population, well-intended research could not be undertaken or completed, and the population under study has been *left with a sense of mistrust, stigmatization, or weakened political authority.
Genetics: what does it tell you about people
We are varied Different cultures -social vs genetics -genetic effect + environmental effects -how do you communicate this knowledge to patients?
Warrior Gene - Genomic research done the wrong way
Nicotine metabolism
-could be high or low
-if you were getting nicotine replacement therapy and were a slow metaboliser, Nicotine would still be in your system upon next dose, therefore never weening yourself off it
-presented as: “this is the reason why Maori are violent, because they have this gene”
- is more proportion of gene in Maori popn (can still be found in other popn)
Man Brunner 1993, inactive variant of MAOA associated with a dutch family with antisocial behaviour
Rod Lea 2006: MAOA-L in17/46 Maori men –> MAOA-L as “the warrior gene”
MAOA and MAOA-L activity greatly influenced by environment, habits (e.g. smoking), other genes, different relevance in different ethnic groups
Rekaipaaka Health and Ancestry Study
Expectations and Experience
Iwi lead study- iwis having majority of disease death within each iwi
-RHAS is the only non-disease specific population genetic research project of its type ever attempted in NZ
Great hopes are help for the study- not least that it may establish a prototype for how population genetic research projects may be conducted within indigenous communities in the future. It is hoped that it will provide a case study of the way in which research involving a community may be conducted to directly benefit the community
-RHAS was one a beacon of light and hope- a torch lighting the way for a promising future for genetic and genomic research with indigenous populations and for communities with a common ancestry. But the torch was dropped leaving scorched earth in its place
Maori views on biobanking and genomic research
Indigenous Input – Literature & Indigenous Advisory Panel Maori Issues – Key Maori Informants (working unis)
Tribal Perspectives – Workshops with 5 x Iwi (DHBs)
Whanau Experiences – Case Studies with 4 x projects (people consented to be parts of studies)
Develop guidelines for biobanking and genomic res
Cultural Foundation
Te Mata Ira Framework for Genomic Research
He Tangata Kei Tua Relationship Model for Biobanking
KEY INFORMANT THEMES INDIGENOUS/MAORI
Protection of Maori rights and interests
Focus on Maori health priorities
Robustness of genomic research methods
Control over samples and data
Expectations of consultation Expectations of consent
Ongoing feedback and communication
Iwi themes
Engagement occurs and tissue removed for a range of reasons
Whanau make decisions, Hapū and Iwi support interests Experience loss of control (over time)
Accountability of research organisations
Iwi governance over projects is expected
Communication about progress and results is essential Outcomes for participants, iwi & communities
Education is important (increasingly as things get more technical)
Power inbalance
Between being the patient and being the professional/researcher
- loss of control over time
KEY CONCEPTS INFORMING A CULTURAL LOGIC
familar words in Moari Familial context -useful to be familar for them Whakapapa= ancestory Taunga= something special Takoha= gift Kawa= principles Tikanga= Mauri=
Protecting whakapapa
Protecting Whakapapa –> Protecting Identity (iwi) –> Protecting Story (hapu) –> Protecting family (whanau)
- taking tissue for genetic research
- protect familial health
- protect iwi stories/ancestory
- not just the raw information but how the story is told
