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Ethical Issues in Drawing Blood for an HIV Test in a Survey Context

Ethical Issues in Drawing Blood for an HIV Test in a Survey Context. P. Stanley Yoder Senior Qualitative Research Specialist Macro International. Presentation Outline. Ethical issues involved in conducting HIV tests in a survey context Context of HIV testing in Mali

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Ethical Issues in Drawing Blood for an HIV Test in a Survey Context

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  1. Ethical Issues in Drawing Blood for an HIV Test in a Survey Context P. Stanley Yoder Senior Qualitative Research Specialist Macro International

  2. Presentation Outline • Ethical issues involved in conducting HIV tests in a survey context • Context of HIV testing in Mali • Voluntary nature of participation • Field situation of the survey • Administration of the informed consent statement • Use of the green card (coupon for HIV test) conclusions • Issues for discussion

  3. Ethical issues in conducting HIV tests in a survey context • Presenting survey and blood test to make participation voluntary Many government institutions do not want participation to be voluntary • Conducting interviews to facilitate privacy and confidentiality • Using the informed consent statement to communicate effectively • Making it possible to obtain test results - remote: giving individuals a coupon or letter for free test - immediate: providing testing and counseling on the spot or next day

  4. Context of Study • Third Demographic and Health Survey in Mali (MDHS III) • National survey with 403 clusters • 25 households per cluster in urban areas • 40 households per cluster in rural areas • Fieldwork January to May 2001 • Household and women’s questionnaire in all households

  5. Context of Study (cont.) • Men’s questionnaire in one-third of households for all males 15 to 59 years of age sample target of 3,500 men sample target of 13,500 women • In these households, all adults asked to give a few drops of blood: - test for anemia - test for HIV

  6. Rationale for Study • First experience for Macro to conduct a blood test for HIV as part of a national survey • Concern about applying government rules for the use of informed consent statements • Ambiguity about how “informed” and “voluntary” can be assessed • Importance of recognizing the role of the social context

  7. Study Objectives • Discover how the informed consent statements were being presented • Determine what individuals understood from the informed consent statement • Understand why some persons declined participation and others accepted • Find out what individuals had to say about AIDS

  8. Sample of Ten Clusters • Three clusters in Mopti region: two urban, one rural • Three clusters in Sikasso region: two urban, one rural • Four clusters in Bamako Expected number of cases: about 200

  9. Instruments Formulated 1. Observation of introduction of team to household heads 2. Observation of presenting informed consent statement to respondents 3. Questioning guide for respondents (recall of informed consent statement, giving of green card, knowledge of AIDS)

  10. Individuals Observed/Interviewed Women Men Total Mopti 28 19 47 Sikasso 36 38 74 Bamako 37 38 75 Total 101 95 196

  11. Household Context for Interviewing • Most activities occur outside • Others often listen to interview process • Head of household decides for others • Work, play and leisure are group activities • Question: How do we try to assure some privacy and confidentiality in such a context?

  12. Informed Consent Statement • Developed by Macro with USAID and the CDC • Formal language • Two parts: one part for anemia, a second part for HIV, but all on one page • Offer of a green card • Languages: French, Bambara, Fulfulde, and Sonhray

  13. Presentation of the Informed Consent Statement to Respondents

  14. Elements Presented in Informed Consent Statement • Team comes from Ministry of Health • Blood tests are part of the survey • Blood test is for anemia and for HIV • Participation is voluntary

  15. Possible Reasons for Refusal(hypothetical) • News of the survey team’s arrival • Introduction of the survey team • Presentation of the consent statement • Ideas or images of AIDS

  16. Acceptance and Refusal by Type of Presentation of Informed Consent

  17. Stated Reasons for Refusal to Participate in Blood Test • Not linked to performance of DHS team • Related to the image of AIDS • I don’t have AIDS • I have confidence in myself • I don’t know anything about AIDS

  18. Purpose of the Green Card

  19. Conclusions • Power relations between government and population determine participation • Respondents did not understand well what anemia or AIDS might be • Informed consent statement too formal and too complex to be understood • Efforts to facilitate obtaining HIV test results must be increased

  20. Ethical Issues • How does the field situation affect the possibility of privacy and confidentiality? • How can we improve communication of an informed consent statement? - simpler language? - list of key elements? • How can we facilitate giving HIV test results to those interested?

  21. DHS National Surveys that Include HIV Testing Completed Underway Planned Mali Kenya Senegal Dom Rep Burkina Faso Uganda Zambia Cameroon Tanzania Ghana (under current DHS contract)

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