Ethical Issues in Research Conducted in Darfur

Ethical Challenges to Research in Darfur

Ethics at the extremes: Lessons From Population Health Surveys in Darfur

Ghaiath HusseinMBBS, MD Comm. Med. (Part I, Sudan)

MHSc. Student, Joint Center for Bioethics (U of T)

National Council on Ethics in Human Research (NCER) conference, Ottawa

February 16, 2008

Ethical Challenges to Research in Darfur

Disclaimer and Competing Interests

• 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.

• The views expressed in this presentation are my own and do not reflect the viewpoint of any institute or organization.

Ethical Challenges to Research in Darfur

In this presentation

• Darfur in a nutshell.• Research in Darfur• Challenges for research in conflicts• Ethical issues in focus• Steps forward

Ethical Challenges to Research in Darfur

Darfur in a nutshell

• Area: 510,888 sq km, • Pre-conflict Population:

6.77 million of different ethnic groups and spoken languages.

• IDPs: 2.2 million (OCHA, 2007) • Refugees: 234,500 (UNHCR)

Ethical Challenges to Research in Darfur

Examples of conducted studies• Morbidity and Mortality surveys• Household Health Surveys• Food security• Nutritional assessments• Service assessment:• Vaccination• Education

• Gender-Based Violence (GBV)

Ethical Challenges to Research in Darfur

Ethical Challenges to Research in Conflicts

• Insecurity• Limited (Fluctuating) Resources• Vulnerable population• Cultural Differences

Ethical Challenges to Research in Darfur

Ethical issues in focus

1.Informed Consent2.Selection Bias vs. “Feasibility”3.Conflict of Interests4.Benefits vs.5.Risks

o Risks to the participantso Risks to the survey teams

Ethical Challenges to Research in Darfur

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

Ethical Issues About Consent

(Hussein, G., 2007)

Ethical Challenges to Research in Darfur

2. Selection Bias

Accessible

Limited access

No access

• Implications of “accessibility”:• • Accessible• •sample frame

Example of implications: (Hirotsugu, A., 2007)

• 44 surveys (February-September 2004)

• 31% underwent two or more surveys, and

• 2% underwent five or more• No access• no assessment• Less

aids

Ethical Challenges to Research in Darfur

3. Conflict of Interests

• Humanitarian workers increased from 228 in 2004 to 12,500 in 2005 (>500%),

• 81 NGOs and 13 UN agencies• Total US Humanitarian Assistance

(since 2004): $939,279,297 • (Source: http://www.usaid.gov/locations/sub-saharan_africa/sudan/ )

Ethical Challenges to Research in Darfur

Political Tools?

Good and “ethical”?

Ethical Challenges to Research in Darfur

4. Benefits of Conducted Surveys

• Planning tools• Advocacy tools• Local personnel: • Capacity building• Offering jobs• More services for more affected• Opportunity for vulnerable people: speak

out (debriefing)?

Ethical Challenges to Research in Darfur

5. Potential Risks to Participants

• In war time, is information “minimal-risk”?

- Full names, tribe and address of HH are “life-threatening” (carjacking incidents)• Debriefing or Psychological trauma? • When 40 minutes become 90 answering

up to 5 questionnaires…

Ethical Challenges to Research in Darfur

Two hours late! No water today!

• 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/

Ethical Challenges to Research in Darfur

Risks to survey teams

• One of my teams entered a town labelled as “safe”

• The security situation had suddenly deteriorated

• The town was isolated• No communication available for 5 days• My team in hostage!• Parents kept on calling “Bring our children

back!”• A miracle happened! Locals helped them

to escape• They returned back “safe” (at least their

bodies)• They wanted to resign; other teams

panicked

What to do?

How to get them

out?

Do you mean

alive or dead?

Ethical Challenges to Research in Darfur

Few steps forward

• We need research but we need…• “Practical” Ethical Guidelines : stakeholders • Ethics reviewing process:

joint, independent, standardized• Better Sharing of information and results of

surveys• Keep surveys scientific neutral tools (politics and

money)• Train on research ethics

Ethical Challenges to Research in Darfur

Acknowledgements

Thanks to my “Teachers” in the JCB:

And to the heroes whom I worked with in Darfur

Ethical Challenges to Research in Darfur

• References • Hirotsugu Aiga. Bombarding people with questions: a reconsideration

of survey ethics. Bulletin of the World Health Organization (BLT) 85[11]. 2007. 12-12-2007.

• K Dyregrov, A Dregrov, M Raundalen. Refugee families' experience of research participation. J Trauma Stress 2000;(13):413-426.

• Ghaiath Hussein. Sudan Household Health Survey: South Darfur Technical Report. 2006. Federal Ministry of Health and Central Bureau of Statistics, Sudan.

• 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

Ghaiath Hussein: ghaiathme@gmail.com www.bioethicsnet.googlepages.com