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Open Access Research article

Optimizing the HIV/AIDS informed consent process in India

J Sastry, H Pisal, S Sutar, N Kapadia-Kundu, A Joshi, N Suryavanshi, KE Bharucha, A Shrotri, MA Phadke, RC Bollinger and AV Shankar*

BMC Medicine 2004, 2:28  doi:10.1186/1741-7015-2-28

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Optimising informed consent through counselling

Bolajoko O. Olusanya   (2004-09-02 20:12)  Institute of Child Health, 30 Guilford Street, London WC1N 1EH

This article by Sastry et al [1] sought to determine practical tools and steps for facilitating informed consent for public health intervention in communities with low level of literacy. The use of visual decision aids during group and individual counselling significantly enhanced the comprehension of the prospective patients on key informed consent issues. While this outcome was cautiously attributed to the individual counselling sessions however, the incremental effect on the number of individuals that consented to undergo the HIV screening test was not clear from the article.

Enhanced comprehension may not necessarily translate to consent to participate in screening because customs, beliefs or personal values could sometimes influence attitude towards screening unfavourably. The authors in fact alluded to this possibility among women in this population who by the local customs are not completely autonomous from their fathers (if unmarried) and husbands (if married) in making vital health decisions. And as recently reported, knowledge and attitude on health conditions, the screening process and treatment are key determinants in consenting to or refusing screening test [2]. Prior to screening the patients are likely to fall into four main categories depending on whether their knowledge on HIV/AIDS was good or poor and their attitude to screening was positive or negative, each requiring unique and culturally appropriate counselling strategy for informed choice. It is important for the counsellors to appreciate how this profile ultimately influences the patient’s decision.

It may be argued that the primary goal of communication with patients for ethical purposes is strictly not to obtain consent but rather to ensure that the patient’s choice is informed. For instance, the authors reported that of the 17 questions designed to evaluate the patients’ understanding of the main topics for the group education and counselling, 8 related to standard ethical issues for informed choice. Presumably, these would have included full disclosure of the benefits and risks of participating in the screening test. In effect, informed refusal in this case was to be accepted theoretically as a legitimate decision, even if this was considered as not being in the best interest of the patient. However, in voluntary screening for communicable diseases where overall public interest is at risk this principle is morally difficult to accept. For instance, there was widespread legitimate concern when some states in Nigeria boycotted routine polio vaccination [3]. The risk of re-infection within the country and neighbouring countries far outweighed the right to informed refusal. The concern would, of course have been minimal if a coverage that assured herd immunity was achievable without the participation of the boycotting states. Similarly, informed refusal to participate in HIV/AIDS screening is not risk-free. It is therefore necessary to ascertain possible reasons for withholding consent in these circumstances with a view to planning appropriate strategies for securing consent to undergo the screening test also. The authors’ systematic use of well-structured questionnaires in the individual counselling sessions would equally prove valuable for this purpose.

References

1. Sastry J, Pisal H, Sutar S, Kundu N, et al. Optimising the HIV/AIDS informed consent process in India. BMC Medicine 2004; 2:28

2. Olusanya BO, Luxon LM, Wirz SL. Infant hearing screening: route to informed choice. Arch Dis Child 2004 (in press)

3. Kapp C. Nigerian states again boycott polio-vaccination drive. Lancet 2004;363:709

Competing interests

None

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