Screening for diabetes in Indigenous communities in Alberta, Canada: reframing bioethical considerations within an Indigenous context
Screening for diabetes in IndigenousScreening for diabetes in Indigenouscommunities in Alberta, Canada:communities in Alberta, Canada:Kelli Ralph-CampbellDr. Ellen L. TothDr. Malcolm King (presenter)University of AlbertaEdmonton, CanadaFebruary 11, 2006Otago University, DunedinReframing bioethical considerationswithin an Indigenous context
Number of Aboriginal People10 – 299300 – 19992000 – 10,000Greater than 10,000Atlas of Canada, 2003Aboriginal Population 2001 CensusAboriginal Population 2001 CensusALBERTAALBERTA
Aboriginal People in Alberta, 2001Aboriginal People in Alberta, 2001• Approx. 156,000 Aboriginal People• 44,000 in Edmonton: 22,000 Calgary• 58% under age 24• 80,700 Registered Indians• 46 First Nations Communities• 66,000 Métis, 5000 live in 8 SettlementsAlberta Aboriginal Affairs
The Medicine ChestThe Medicine Chest• “… a medicine chest shall be kept at thehouse of each Indian Agent for the use andbenefit of the Indians at the direction of suchagent.” (Treaty 6, 1876)• Rural and remote health practitioners andservices are today’s medicine chest
First Nations/Inuit to Canadian Rate Ratio forFirst Nations/Inuit to Canadian Rate Ratio forAgeAge--adjusted Chronic Disease Prevalenceadjusted Chronic Disease PrevalenceYoung et al. and the FNIRHS Steering Committee0246Diabetes Hypertension HeartProblemsCancer Arthritis /RheumatismMale Female
05101520253035<10 10-19 20-29 30-39 40-49 50-59 60-69 70-79 80+First Nations Social Services Subsidy No-SubsidyPreliminary AgePreliminary Age--Specific Prevalence EstimatesSpecific Prevalence EstimatesAccording to Alberta Health Care Funding (1998)According to Alberta Health Care Funding (1998)Svenson, unpublished
051015202530AgeStandardizedPercentNon-HispanicWhitesNon-HispanicBlackMexicanAmericanNon-HispanicWhiteNon-HispanicBlackMexicanAmericanMales FemalesImpaired FastingGlucoseUndiagnosed DMDiagnosed DMNHANES IIINHANES III
PopulationPopulation--based screening forbased screening fordiabetes in Aboriginal communitiesdiabetes in Aboriginal communitiesin Canadain Canada• Kahnawake (Quebec):No blood tests, no epidemiology• Sandy Lake (Ontario):1997, 10.7% in age 10+ (41% of 26%)• James Bay Cree (Quebec):2001, 2.5% in age 10 + (10% of 15%)• Province of Manitoba:1998, 2% of adults, 1/3 of 5%
Undiagnosed diabetes and diabetes riskUndiagnosed diabetes and diabetes riskby age group in an Alberta studyby age group in an Alberta studyAge group UndiagnosedDiabetesIFG/IGT0-9 0% 11.1%10-19 0.7% 15.0%20-29 2.3% 17.6%30-39 2.6% 22.1%40-49 3.2% 24.4%50-59 5.2% 34.6%>60 6.6% 37.2%
> 1000 Aboriginal individuals in AlbertaSharndeep N. Kaler*, Ellen L. Toth, University of AlbertaPreliminary Results47%23%30%BMI (n = > 1000)7%32%57%A1C (n = >1000)4%24%70%Fasting Blood Glucose(n > 1000)Diabetes orhigh riskAt riskNormalRisk FactorCriteria:Fasting Glucose: at risk ≥5.7 ≤6.9 mmol/L, Diabetes ≥7.0mmol/LHbA1C: at risk ≥5.5 <6.1%, high risk ≥6.1%BMI: at risk ≥25 <30 kg/m2, high risk ≥30kg/m2FASTING GLUCOSE, A1C and BMI
DoesDoes undiagnosedundiagnosed diabetesdiabetesbecomebecome diagnoseddiagnosed diabetes?diabetes?Does IFG/IGT lead to diabetes?Does IFG/IGT lead to diabetes?At risk IFG / IGT DM Complications Death
Prevention trialsPrevention trials•• Success in IGT ptsSuccess in IGT pts……DPP Study1. Lifestyle: 58%reduction indiabetes2. Metformin Gp:31%reduction indiabetes3. Incidence per 100per/yr11 placebo7.8 metform4.8 lifestyleDPP Res Group, NEJM 346:393,’02YearCumulativeincidenceofdiabetes(%)PlaceboMetforminLifestyle
Clinical/Individual ApproachClinical/Individual ApproachInterventionMeasurementEducation, counseling,risk factor modificationWeight, adiposity, lipidprofiles, family historyFBS, HbA1CEarly detection,counseling re: risksHbA1C, Proteinuria,retinal exam, foot examEducation, controlglycemia & BP, ACE-ICVD management,dialysis, infection TxCVD/renal function,retinal examMeasurementInterventionObesity rates, physicalactivity patterns, dietaryhabits, DM incidenceHealth promotion -healthy lifestylesEducate healthpersonnel, screeningScreening patterns,HbA1c at Dx, “late”diagnosis rateEducation, promoteoptimal clinical practice% in education,complication screeningrates, use of ACE-I.Case fatality rates,hospital LOS.Specialist care system,home care supportsAt risk IGT DM Complications DeathPublic Health/Population Approach
Canadian Diabetes Strategy 2005Canadian Diabetes Strategy 2005--20102010New Component Costs for CDSNew Component Costs for CDS ($ millions)($ millions)National Diabetes Surveillance System $12 (up from $10.8)Research $50Prevention and Promotion-National $50 (up from $41.8)National Coordination $25 (up from $4.4)Evaluation of Current Models $10Innovation Funds $100Translation $25Aboriginal Diabetes Initiative– Primary Prevention– Clinical$75 (up from $58)$250TOTAL $597 million(Up from $115 million)Stewart Harris, May 2003
• Respect for human dignity.• Respect for free and informed consent.• Respect for vulnerable persons.“Vulnerable persons” ought to include thosewhose capacity for decision-making may berestricted or unduly influenced by sociocultural,socioeconomic, and/or sociohistorical realities• Respect for privacy and confidentiality.• Respect for justice and inclusiveness.• Balancing harms and benefits.• Minimizing harm / maximizing benefit.Canadian TriCanadian Tri--Council Policy Statement:Council Policy Statement:Ethical conduct for research involvingEthical conduct for research involvinghumans: Guiding principles, Aug. 1998humans: Guiding principles, Aug. 1998
TCPS: Considerations for researchTCPS: Considerations for researchinvolving Aboriginal people/involving Aboriginal people/communitiescommunities• Research may involve Aboriginal communities whenit focuses on the community, its subgroups orindividuals as members.• Research may seek information on the characteristicbeliefs, values, social structures, etc. that definegroup identity.• Special moral considerations.
Researchers should consider the interests of thegroup when:• Property or private information belonging to thegroup as a whole is studied or used (includes culturalproperties, may include human tissue).• Leaders of the group are involved in identifyingpotential participants;• The research is designed to analyze or describecharacteristics of the group; or• Individuals are selected to speak on behalf of, orrepresent, the group.TCPS: Considerations for research involvingTCPS: Considerations for research involvingAboriginal people/communitiesAboriginal people/communities
TCPS:TCPS: ““Good PracticesGood Practices”” for researchfor researchinvolving Aboriginal groupsinvolving Aboriginal groups• Respect culture, traditions and knowledge.• Work in partnership with the group.• Consult members of the group who have expertise.• Involve the group in the designing the project.• Examine how the research can address group’sneeds.• Include viewpoints held by different segments of thegroup.• Disclose research findings to the community first (i.e.before publishing final report).
World Health Organization (2004):World Health Organization (2004):Principles of ScreeningPrinciples of Screening1. Is the disease a public health program?2. Is there an acceptable treatment for the recognizeddisease?3. Is there a recognizable latent or early symptomaticstage?4. Is the natural history of the disease understood?5. Is there a consensus on whom to treat?6. Are facilities for diagnosis and treatment availableand accessible?7. Is there an economic balance between case findingand subsequent medical care?8. Is the program sustainable?PATH, 2000; WHO, 2004.
American Diabetes Association (2004):American Diabetes Association (2004):Additional Principle for DiabetesAdditional Principle for DiabetesScreeningScreening9. Treatment after early detection yieldsbenefits superior to those obtained whentreatment is delayed.American Diabetes Association, 2004.
Screening in Aboriginal Communities:Screening in Aboriginal Communities:American Diabetes AssociationAmerican Diabetes Association vsvs..Canadian Diabetes AssociationCanadian Diabetes AssociationADA discourages screening in community settingsbecause:• failure of patients to pursue follow-up to confirm apositive or negative screen;• low compliance with treatment recommendations;uncertain impact on long-term health;• poorly targeted screening; and inappropriate testing ofthose at low risk or those already diagnosed
2003 Canadian Diabetes Association PracticeGuidelines:“Community-based diabetes screeningprograms should be established inAboriginal communities.”Screening in Aboriginal Communities:Screening in Aboriginal Communities:American Diabetes AssociationAmerican Diabetes Association vsvs..Canadian Diabetes AssociationCanadian Diabetes Association
PopulationPopulation--based screening forbased screening fordiabetes in Aboriginal communities:diabetes in Aboriginal communities:Best practice?Best practice?Screening for diabetes:• Condition should be relatively easy and cheap todiagnose? YES• Treatment and follow-up should be available??????• Worthwhile?: Is early treatment cost effective?
Benefits of Diabetes Screening inBenefits of Diabetes Screening inAboriginal Communities:Aboriginal Communities:• There is a lot of undiagnosed diabetes• Diabetes is easy and relatively cheapto test for.• Diagnosis might mean good treatmentcan be provided.• Good treatment might meanprevention of harmful and costlycomplications.• Other risk assessment can be done.
Disadvantages of Diabetes ScreeningDisadvantages of Diabetes Screeningin Aboriginal Communities:in Aboriginal Communities:• There might not be access to good treatment• There is no proof that earlier diagnosis leadsto better treatment, less complications, orless costs.• Individuals may not want to know if they havediabetes: they may fear labeling,consequences at work, or at home• Communities may feel vulnerable andexposed, fear labeling.• Costs of testing can be at the expense ofgeneral prevention activities or clinical care.
Aboriginal perceptions of diabetes:Aboriginal perceptions of diabetes:• Many Aboriginal people consider diabetesan example of “white man’s illness,” a new,introduced disease similar to smallpox andtuberculosis in the past. The adoption ofmodern foods and the decline of huntingand fishing are widely believed to be theunderlying causes of the epidemic.”Young et al, 2000
Aboriginal perceptions of diabetes:Aboriginal perceptions of diabetes:“It’s a disease that runs in many of ourfamilies. Too many of us feel there’slittle to be done once you have beendiagnosed…Especially men – theyfigure it’s a death sentence”- Doug Cuthland, Little Pine First Nation
Mobile Diabetes Screening InitiativeMobile Diabetes Screening Initiative(M(Méétis communities in Alberta)tis communities in Alberta)
BRAIDBRAID::BBelieving we canelieving we can RReduceeduce AAboriginalboriginalIIncidence ofncidence of DDiabetesiabetes(A single First Nation community in Alberta)(A single First Nation community in Alberta)
SLICKSLICK::SScreening forcreening for LLimbs,imbs, II--eyes,eyes,CCardiovascular andardiovascular and KKidney complicationsidney complications(First Nations communities in Alberta)(First Nations communities in Alberta)
MDSi, BRAID and SLICK:MDSi, BRAID and SLICK:• Mediate geographic and economic barriers bytaking a screening services to Aboriginal communities.• Follow a model of shared care.• Employ Aboriginal staff, where possible.• Partner with communities.• Consult community members who have expertise.• Report findings to communities regularly and first, andseek their approval before dissemination.• Help to build community-capacity.• Incorporate Aboriginal perspectives of health, healing,collectivity and interconnectedness.
Ethical Tenets Guiding MedicalEthical Tenets Guiding MedicalResearch in North America:Research in North America:The Georgetown PrinciplesThe Georgetown Principles• Beneficence• Nonmaleficence• Justice• AutonomyMoral Imperative: Respect for human dignity
The benefits of screening for diabetes inThe benefits of screening for diabetes inAboriginal communities outweigh potentialAboriginal communities outweigh potentialharms:harms:• Prioritizes service improvements for high-riskcommunities (justice).• Alternatives to conventional methods for screening thatmediate barriers (beneficence/non-maleficence).• Opportunities for community empowerment, capacity-building, a return to traditional lifestyles (autonomy).• Gives communities control over their health (autonomy).• Returning to traditional culture presents an alternativesolution when biomedicine offers no cure (autonomy,beneficence).• Preservation of culture and future generations(autonomy, beneficence).