Research in Greenland ethical aspects

Transcription

1 Research i Greelad ethical aspects Herik B. Krarup MD, Phd Sectio of Molecular Diagostics Aalborg Uiversity Hospital Demark Aalborg Uiversitetshospital Regio Nordjyllad

2 Why am I here 4 I have bee head of the Regioal Research Ethics Committee ad member of the Natioal Research Ethics Committee i Demark 4 I am a advisor i Greelad o viral hepatitis ad occasioally questios of research ethics i geome sequecig 4 I am doig research o hepatitis B i Greelad together with my phd studet Karste Rex Aalborg Uiversitetshospital Regio Nordjyllad

3 Aalborg Uiversitetshospital Regio Nordjyllad

4 Helsiki Declaratio Vulerable Groups ad Idividuals Some groups ad idividuals are particularly vulerable ad may have a icreased likelihood of beig wroged or of icurrig additioal harm. All vulerable groups ad idividuals should receive specifically cosidered protectio Medical research with a vulerable group is oly justified if the research is resposive to the health eeds or priorities of this group ad the research caot be carried out i a o-vulerable group. I additio, this group should stad to beefit from the kowledge, practices or itervetios that result from the research. Aalborg Uiversitetshospital Regio Nordjyllad

5 Helsiki Declaratio Vulerable Groups ad Idividuals Some groups ad idividuals are particularly vulerable ad may have a icreased likelihood of beig wroged or of icurrig additioal harm. All vulerable groups ad idividuals should receive specifically cosidered protectio Medical research with a vulerable group is oly justified if the research is resposive to the health eeds or priorities of this group ad the research caot be carried out i a o-vulerable group. I additio, this group should stad to beefit from the kowledge, practices or itervetios that result from the research. Aalborg Uiversitetshospital Regio Nordjyllad

6 Helsiki Declaratio Vulerable Groups ad Idividuals Some groups ad idividuals are particularly vulerable ad may have a icreased likelihood of beig wroged or of icurrig additioal harm. All vulerable groups ad idividuals should receive specifically cosidered protectio Medical research with a vulerable group is oly justified if the research is resposive to the health eeds or priorities of this group ad the research caot be carried out i a o-vulerable group. I additio, this group should stad to beefit from the kowledge, practices or itervetios that result from the research. Aalborg Uiversitetshospital Regio Nordjyllad

7 Idigeous Peoples There is o iteratioally accepted defiitio of Idigeous Peoples Four criteria are ofte used i iteratioal law: 4 Residig withi or associated with a specific geographic area, the acestral territory ad atural resources i these areas 4 Maiteace of cultural ad social idetity, ad social, ecoomic, cultural ad political istitutios separate from maistream or the domiat society ad culture 4 Descedats from populatio groups preset i a give area 4 Self-idetificatio as beig part of a distict idigeous culture, ad the desire to preserve the culture Aalborg Uiversitetshospital Regio Nordjyllad

8 Is research i Iuit i Greelad differet from research i other Idigeous People? 4 Iuit costitute 80 % of the populatio i Greelad I compariso Aborigial ad Torres Strait Islader Peoples costitute less tha 2 % of the populatio i Australia 4 Greelad has ow Govermet 4 Amog others autoomy over the health care system 4 Although there is resetmet agaist Demark, the cooperatio betwee both peoples ad govermets work fie Aalborg Uiversitetshospital Regio Nordjyllad

9 Idigeous health life expectacy at birth or iequality i health 4 If you belog to the Baka tribe i Cameroo, you ca expect to live to the age of 35 years, 12 years less tha the oidigeous populatio i the same area 4 I Greelad you ca expect to live to the age of 73 years, compared to 82 years i the geeral Daish populatio Lacet, 2016; 388: 104 Aalborg Uiversitetshospital Regio Nordjyllad

10 Ethics i biomedical research i Greelad The Research Ethics Committee for Health Sciece Research i Greelad Greelad's Health Sciece Research Coucil The Board of Health ad Prevetio Greelad Medical Society - Good research practice i Greelad - a guidelie Aalborg Uiversitetshospital Regio Nordjyllad

11 The Research Ethics Committee for Health Sciece Research i Greelad Natioal Physicia s Office Secretariat Board of Health ad Research Lay persos (2) M.D.s (2) Aalborg Uiversitetshospital Regio Nordjyllad

12 The Research Ethics Committee for Health Sciece Research i Greelad Tasks: 4 To carry out a scietific ethical assessmet of biomedical research projects plaed to be coducted i Greelad accordig to the guidelies set out i the Daish law of Research Ethics 4 To follow as much as possible the practice implemeted i the scietific ethics committee system i Demark 4 Follow developmets i biomedical research ad work for the dissemiatio of kowledge of the related ethical issues Aalborg Uiversitetshospital Regio Nordjyllad

13 Greelad's Health Sciece Research Coucil Purpose 4 To discuss geeral aspects of research o Greeladic health coditios 4 To preset a priority of health sciece research i Greelad for the Home Rule Govermet member for health 4 To promote the establishmet ad stregtheig of research etworks 4 To set aside fuds from the Miistry of Health to Naalakkersuisoq for Health 4 To participate i the public debate o research i Greelad Aalborg Uiversitetshospital Regio Nordjyllad

14 Greelad's Health Sciece Research Coucil Research Strategy 1. The implicatios of societal chage o the disease patter icludig research o metal health ad illess 2. Childre i Greelad, Greelad for childre, icludig the family's social behavior ad health 3. Social ad geographical iequalities i health, icludig health coditios i the settlemets 4. Health services research ad prevetio research, icludig itervetio research 5. Huma biological research Aalborg Uiversitetshospital Regio Nordjyllad

15 Greelad Medical Society Good research practice i Greelad - a guidelie Esure optimal relatios betwee researchers ad the populatio i Greelad Requiremets ad advice Icludes all health related research, icl. Register ad questioaire surveys Explais about cultural differeces icl. differece i the way of sayig "o thaks" to participatio Esure cooperatio agreemets that will make the project possible - must be reported to the Board of Health ad Prevetio Aalborg Uiversitetshospital Regio Nordjyllad

16 Why do research i Greelad? Diseases or coditios where the researcher has special isight ad ca cotribute to society (Greelad) Society (Greelad) has particular iterest ad fudig is available No-Iuit researchers fid research ivolvig Iuit populatio exotic or romatic Desire for adveture A little of everythig Focus o the core task More health for the people of Greelad Aalborg Uiversitetshospital Regio Nordjyllad

17 Focus o the core task More health for the people of Greelad Will the Greeladic people get better health Is there a improvemet i the self-perceived health How to esure the Greeladic populatio direct ifluece o research How ca we esure that the Greeladic "precoceptio" / isight comes i at the desig stage of research projects Aalborg Uiversitetshospital Regio Nordjyllad

18 If Greelad s Health Scietific Research Coucil took the lead Made a law o research ethics i Greelad Plaed large overall research projects/areas ad ivited teams to bid Collected all Daish research groups "uder oe umbrella Established a ambitious atioal Greeladic biobak Kept biological material (blood, tissue etc.) ad bioiformatic data i Greelad Established "User Groups" to discuss research projects, for example youg people to discuss research i STDs the Greelad could get a better overview, more syergy ad perhaps better research - ad more health for the people of Greelad Aalborg Uiversitetshospital Regio Nordjyllad

19 Ilulissat the Icefjord Aalborg Uiversitetshospital Regio Nordjyllad

20 20 EEJ Aalborg Uiversitetshospital Regio Nordjyllad