Ethics at the extremes:   Lessons From Population Health Surveys in  Darfur Ghaiath Hussein MBBS, MD Comm. Med. (Part I, S...
Disclaimer and Competing Interests <ul><ul><li>I work with the Research Directorate, in the Federal Ministry of Health (Su...
In this presentation <ul><ul><li>Darfur in a nutshell. </li></ul></ul><ul><ul><li>Research in Darfur </li></ul></ul><ul><u...
Darfur in a nutshell <ul><ul><li>Area : 510,888 sq km,  </li></ul></ul><ul><ul><li>Pre-conflict Population : 6.77 million ...
Examples of conducted studies <ul><ul><li>Morbidity and Mortality surveys </li></ul></ul><ul><ul><li>Household Health Surv...
Ethical Challenges to Research in Conflicts <ul><ul><li>Insecurity </li></ul></ul><ul><ul><li>Limited (Fluctuating) Resour...
Ethical issues in focus   <ul><ul><li>Informed Consent </li></ul></ul><ul><ul><li>Selection Bias vs. “Feasibility” </li></...
1. Informed Consent “ I’m …. (name of interviewer)  from …  (name of agency) . This study is not a census. We are studying...
Ethical Issues About Consent Ethical Challenges to Research in Darfur (Hussein, G., 2007)
2. Selection Bias <ul><ul><li>Implications of “accessibility”: </li></ul></ul><ul><ul><li>•  Accessible• •sample frame </l...
3. Conflict of Interests Ethical Challenges to Research in Darfur <ul><ul><li>Humanitarian workers increased from 228 in 2...
Political Tools?  Ethical Challenges to Research in Darfur Good and “ethical”?
4.  Benefits of Conducted Surveys <ul><ul><li>Planning tools </li></ul></ul><ul><ul><li>Advocacy   tools </li></ul></ul><u...
5. Potential Risks to Participants <ul><ul><li>In war time, is information “minimal-risk”? </li></ul></ul><ul><li>- Full n...
Two hours late! No water today! <ul><ul><li>Photo showing the long lines of women waiting for their turns to get water, Ka...
Risks to survey teams <ul><ul><li>One of my teams entered a town labelled as “safe” </li></ul></ul><ul><ul><li>The securit...
Few steps forward <ul><ul><li>We need research but we need… </li></ul></ul><ul><ul><li>“ Practical” Ethical Guidelines :  ...
Acknowledgements  Thanks to my “Teachers” in the JCB: And to the heroes whom I worked with in Darfur  Ethical Challenges t...
<ul><ul><li>References   </li></ul></ul><ul><ul><li>Hirotsugu Aiga.  Bombarding people with questions: a reconsideration o...
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Ethical Issues in Research Conducted in Darfur

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Ethical Issues in Research Conducted in Darfur

  1. 1. Ethics at the extremes: Lessons From Population Health Surveys in Darfur Ghaiath Hussein MBBS, MD Comm. Med. (Part I, Sudan) MHSc. Student, Joint Center for Bioethics (U of T) Ethical Challenges to Research in Darfur National Council on Ethics in Human Research (NCER) conference, Ottawa February 16, 2008
  2. 2. Disclaimer and Competing Interests <ul><ul><li>I work with the Research Directorate, in the Federal Ministry of Health (Sudan) and sponsored by the World Health Organization for my fellowship in bioethics at the JCB. </li></ul></ul><ul><ul><li>The views expressed in this presentation are my own and do not reflect the viewpoint of any institute or organization. </li></ul></ul>Ethical Challenges to Research in Darfur
  3. 3. In this presentation <ul><ul><li>Darfur in a nutshell. </li></ul></ul><ul><ul><li>Research in Darfur </li></ul></ul><ul><ul><li>Challenges for research in conflicts </li></ul></ul><ul><ul><li>Ethical issues in focus </li></ul></ul><ul><ul><li>Steps forward </li></ul></ul>Ethical Challenges to Research in Darfur
  4. 4. Darfur in a nutshell <ul><ul><li>Area : 510,888 sq km, </li></ul></ul><ul><ul><li>Pre-conflict Population : 6.77 million of different ethnic groups and spoken languages. </li></ul></ul><ul><ul><li>IDPs : 2.2 million (OCHA, 2007) </li></ul></ul><ul><ul><li>Refugees : 234,500 (UNHCR) </li></ul></ul>Ethical Challenges to Research in Darfur
  5. 5. Examples of conducted studies <ul><ul><li>Morbidity and Mortality surveys </li></ul></ul><ul><ul><li>Household Health Surveys </li></ul></ul><ul><ul><li>Food security </li></ul></ul><ul><ul><li>Nutritional assessments </li></ul></ul><ul><ul><li>Service assessment: </li></ul></ul><ul><ul><li>Vaccination </li></ul></ul><ul><ul><li>Education </li></ul></ul><ul><ul><li>Gender-Based Violence (GBV) </li></ul></ul>Ethical Challenges to Research in Darfur
  6. 6. Ethical Challenges to Research in Conflicts <ul><ul><li>Insecurity </li></ul></ul><ul><ul><li>Limited (Fluctuating) Resources </li></ul></ul><ul><ul><li>Vulnerable population </li></ul></ul><ul><ul><li>Cultural Differences </li></ul></ul>Ethical Challenges to Research in Darfur
  7. 7. Ethical issues in focus <ul><ul><li>Informed Consent </li></ul></ul><ul><ul><li>Selection Bias vs. “Feasibility” </li></ul></ul><ul><ul><li>Conflict of Interests </li></ul></ul><ul><ul><li>Benefits vs. </li></ul></ul><ul><ul><li>Risks </li></ul></ul><ul><ul><ul><li>Risks to the participants </li></ul></ul></ul><ul><ul><ul><li>Risks to the survey teams </li></ul></ul></ul>Ethical Challenges to Research in Darfur
  8. 8. 1. Informed Consent “ I’m …. (name of interviewer) from … (name of agency) . This study is not a census. We are studying… (aim of the study), and we need to ask you some questions about …, and to do… This will take about 30 minutes of your time. All the information that you will provide will be strictly confidential , and your answers will never be identified . You will not be given any direct aid, or compensation for participating in this survey. May I start now?” Modified from Sudan Household Health Survey ( www.shhs.i8.com ) Ethical Challenges to Research in Darfur
  9. 9. Ethical Issues About Consent Ethical Challenges to Research in Darfur (Hussein, G., 2007)
  10. 10. 2. Selection Bias <ul><ul><li>Implications of “accessibility”: </li></ul></ul><ul><ul><li>• Accessible• •sample frame </li></ul></ul><ul><li>Example of implications: (Hirotsugu, A., 2007) </li></ul><ul><ul><li>44 surveys (February-September 2004) </li></ul></ul><ul><ul><li>31% underwent two or more surveys, and </li></ul></ul><ul><ul><li>2% underwent five or more </li></ul></ul><ul><ul><li>No access• no assessment• Less aids </li></ul></ul>Ethical Challenges to Research in Darfur Accessible Limited access No access
  11. 11. 3. Conflict of Interests Ethical Challenges to Research in Darfur <ul><ul><li>Humanitarian workers increased from 228 in 2004 to 12,500 in 2005 (>500%), </li></ul></ul><ul><ul><li>81 NGOs and 13 UN agencies </li></ul></ul><ul><ul><li>Total US Humanitarian Assistance (since 2004): $939,279,297 </li></ul></ul><ul><ul><li>(Source: http://www.usaid.gov/locations/sub-saharan_africa/sudan/ ) </li></ul></ul>
  12. 12. Political Tools? Ethical Challenges to Research in Darfur Good and “ethical”?
  13. 13. 4. Benefits of Conducted Surveys <ul><ul><li>Planning tools </li></ul></ul><ul><ul><li>Advocacy tools </li></ul></ul><ul><ul><li>Local personnel : </li></ul></ul><ul><ul><li>Capacity building </li></ul></ul><ul><ul><li>Offering jobs </li></ul></ul><ul><ul><li>More services for more affected </li></ul></ul><ul><ul><li>Opportunity for vulnerable people: speak out ( debriefing ) ? </li></ul></ul>Ethical Challenges to Research in Darfur
  14. 14. 5. Potential Risks to Participants <ul><ul><li>In war time, is information “minimal-risk”? </li></ul></ul><ul><li>- Full names, tribe and address of HH are “life-threatening” (carjacking incidents) </li></ul><ul><ul><li>Debriefing or Psychological trauma? </li></ul></ul><ul><ul><li>When 40 minutes become 90 answering up to 5 questionnaires… </li></ul></ul>Ethical Challenges to Research in Darfur
  15. 15. Two hours late! No water today! <ul><ul><li>Photo showing the long lines of women waiting for their turns to get water, Kalma Camp, South Darfur. Source: http://www.flickr.com/photos/meandophelia/15656083/ </li></ul></ul>Ethical Challenges to Research in Darfur
  16. 16. Risks to survey teams <ul><ul><li>One of my teams entered a town labelled as “safe” </li></ul></ul><ul><ul><li>The security situation had suddenly deteriorated </li></ul></ul><ul><ul><li>The town was isolated </li></ul></ul><ul><ul><li>No communication available for 5 days </li></ul></ul><ul><ul><li>My team in hostage! </li></ul></ul><ul><ul><li>Parents kept on calling “Bring our children back!” </li></ul></ul><ul><ul><li>A miracle happened! Locals helped them to escape </li></ul></ul><ul><ul><li>They returned back “safe” (at least their bodies) </li></ul></ul><ul><ul><li>They wanted to resign; other teams panicked </li></ul></ul>Ethical Challenges to Research in Darfur What to do? How to get them out? Do you mean alive or dead?
  17. 17. Few steps forward <ul><ul><li>We need research but we need… </li></ul></ul><ul><ul><li>“ Practical” Ethical Guidelines : stakeholders </li></ul></ul><ul><ul><li>Ethics reviewing process: </li></ul></ul><ul><li>joint, independent, standardized </li></ul><ul><ul><li>Better Sharing of information and results of surveys </li></ul></ul><ul><ul><li>Keep surveys scientific neutral tools (politics and money) </li></ul></ul><ul><ul><li>Train on research ethics </li></ul></ul>Ethical Challenges to Research in Darfur
  18. 18. Acknowledgements Thanks to my “Teachers” in the JCB: And to the heroes whom I worked with in Darfur Ethical Challenges to Research in Darfur
  19. 19. <ul><ul><li>References </li></ul></ul><ul><ul><li>Hirotsugu Aiga. Bombarding people with questions: a reconsideration of survey ethics . Bulletin of the World Health Organization (BLT) 85[11]. 2007. 12-12-2007. </li></ul></ul><ul><ul><li>K Dyregrov, A Dregrov, M Raundalen. Refugee families' experience of research participation . J Trauma Stress 2000;(13):413-426. </li></ul></ul><ul><ul><li>Ghaiath Hussein. Sudan Household Health Survey: South Darfur Technical Report. 2006. Federal Ministry of Health and Central Bureau of Statistics, Sudan. </li></ul></ul><ul><ul><li>A Retrospective Mortality Survey among Internally Displaced Persons (IDPs)and other affected Populations Greater Darfur, Sudan, April – June 2005: Final Protocol. 5-5-2005. Khartoum, World Health Organization and Federal Ministry of Health, Sudan </li></ul></ul>Ethical Challenges to Research in Darfur Ghaiath Hussein: [email_address] www.bioethicsnet.googlepages.com

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