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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

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

P. Stanley Yoder

Senior Qualitative Research Specialist

Macro International

presentation outline
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
ethical issues in conducting hiv tests in a survey context
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

context of study
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
context of study cont
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

rationale for study
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
study objectives
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
sample of ten clusters
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

instruments formulated
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)

individuals observed interviewed
Individuals Observed/Interviewed

Women Men Total

Mopti 28 19 47

Sikasso 36 38 74

Bamako 37 38 75

Total 101 95 196

household context for interviewing
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?
informed consent statement
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
elements presented in informed consent statement
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
possible reasons for refusal hypothetical
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
stated reasons for refusal to participate in blood test
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
conclusions
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
ethical issues
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?
dhs national surveys that include hiv testing
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)