The Right to Refuse HIV Testing Not Fully Communicated

The 2007 Ethiopian PMTCT guideline impose the obligation on health care provider to clearly inform the client ( pregnant woman) that she has the right to say ‘ No’ to (that is, to opt out) the offered HIV testing and that any refusal of testing by no means affects the services she will get from the health

166 facility.5(Emphasis added) Accordingly, this study aimed to investigate to what extent the right to refuse HIV testing was communicated during the pre-test information sessions.

Data gathered from the interviews with health care workers shows that there seems to be a confusion of the obligation to expressly communicate the right to refuse to clients with the obligation to ensure that clients take up the HIV test with their consent. For instance, the health care providers who participated in this study repeatedly responded when asked if they have the practice of clearly communicating the right to refuse testing to their clients with the following; ‘It is not allowed to conduct HIV test without

the permission of the patients’ and ‘pregnant women are always asked for their authorization for HIV’’

‘No woman is tested without her wanting to test for HIV’. Similar but more argumentative statements

were made by the nurse from Mekelle as quoted below:

‘After making them [pregnant women] understand the benefit of HIV testing, we then

proceed to ask for their agreement to the testing ... we do not force them to test without their will ... we always ask for their will... women know what is best for them .. They know how important HIV testing is during pregnancy ... they only need us to remind them and they agree for the testing ... we[ health care provider] do not need to remind them that

they can refuse ... because we do not force them to the testing and they know that’

(Nurse, Mekelle)

Health care providers who participated in this study avoided answering directly the question regarding their practice of clearly communicating the right to refuse HIV testing to the pregnant women visiting their health centres. The data collected shows that most of their responses revolve either on their practice

5_{Federal Ministry of Health (MOH) and Federal HIV/AIDS Prevention and Control Office (HAPCO) Guidelines for the} Prevention of Mother –to-Child Transmission of HIV (Addis Ababa, 2007) 11 and 12.

167 of soliciting consent as indicated above or describing the worry that they have in communicating the right to refuse to their clients. One good example of such responses by the health care provider is presented below:

‘You see sometimes communicating the right to refuse to the pregnant women can send the wrong message or wrongly understood that it is ok if she did not to test if she does not want to. That is what our daily experience tells us ... So we do not encourage women to skip HIV testing during pregnancy. Rather what we do is that we make them understand on the benefit of the testing and obtain their authorization for the testing.’

(Midwife, Ofla)

Similarly, women who participated in this study were also hesitant to answer directly whether or not the right to refuse HIV testing had been communicated by their antenatal care providers, although one can easily infer from their statements that the right to refuse might not have been communicated. This may be explainable as the respondents were very aware of their right not to be forced to be tested for HIV but not much awareness on the right to be clearly communicated about her right to refuse the testing if she does not wish to test. The quotation below captures this dimension:

Researcher: ‘Were you told that you have the right to refuse the testing?’

Respondent: ‘ ... they [ health workers] do not tell you that you can refuse but if you do not want to test you can refuse ... They asked for my permission, so it is not that I was not able to refuse . ... If you want you can test if you did not then you can

168 Researcher: ‘I understand what you just said but I still want to know if the right to refuse was

clearly communicated to you’

Respondent:‘... I think you cannot expect them [health workers] to say that... it is like saying if you do not want to you may not test for HIV ... how can they say that? I do not

think that will work. What they do is that they tell us [women/client] the benefits

of HIV testing and if you do not want to test then they do not force you ...they

will just try to make you understand the benefit.’ (Interviewee #2)

A much clearer preview of how the right to refuse HIV testing is communicated during antenatal HIV testing of pregnant women came from the non- participatory observation. During the observations at the antenatal clinic in Mekelle hospital, I noted that the right to refuse HIV testing without any consequence to their access to health care services was not explicitly communicated. The antenatal care providers were observed initiating the pre-testing counselling session by asking questions like ‘Have you ever

tested for HIV?’ ‘Do you know that you have to take an HIV test during pregnancy?’ ‘Have you

considered HIV testing before your pregnancy?’ Then often follows the piece of information that

emphasis the medical benefits of HIV testing in relation to the opportunity to prevent mother–to–child transmission of the virus. The ANC providers then proceeded to draw blood from the clients without explicitly notifying the clients of their right to refuse the testing as required by the 2007 Ethiopian PMTCT guideline. The following observed conversation between a pregnant woman and the antenatal care staff illustrates the above:

169 STAFF - ‘Have you ever tested for HIV?’

(Asked while still standing in front of the sitting patient after taking her blood pressure measures and looking down at her)

PREGNANT WOMAN – ‘No.’ STAFF – ‘Why not?’

PREGNANT WOMAN – (silence)

STAFF - ‘You never heard about the benefits of HIV testing during pregnancy?’ PREGNANT WOMAN – (just an eye glance with silence)

STAFF – ‘... HIV testing will help you to know your HIV status so that you will

be able to protect your child from infection if in case you have the diseases.’

PREGNANT WOMAN – (Just nodded)

STAFF – ‘Can I now take you blood for the test?

PREGNANT WOMAN – ‘I can test, there is no problem’ and took out her finger for the test.

Such counselling sessions observed at the antenatal care sessions revealed not only that the right to refuse testing is not clearly communicated as required by the PMTCT guidelines but also the pregnant women were not given the time and the opportunity to reflect on the implications of the testing on their lives.

One respondent, the midwife from Mekelle, reported that pregnant women were actually told that they have no right to refuse the testing when the pregnant women explicitly ask if they have the right to refuse during the pre-test information sessions of HIV testing:

170

‘Sometimes some women ask us [health workers] if it is a MUST to be tested for HIV ... we

tell them yes it is MUST... then they agree for the test. We tell them it must, because we want to take the HIV testing. It is because we want to protect the health of the unborn children and for women’s benefit ...’ (Midwife, Mekelle)