Routine antenatal HIV testing and informed consent: an unworkable marriage?

Bennett, Rebecca

doi:10.1136/jme.2006.018861

Cited by 23 publications

(27 citation statements)

References 14 publications

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“…Recent desires to expand testing because of advances in treatment options and the belief that some of the earlier stigma has lessened have led to a reconsideration of the notion that HIV is exceptional from other conditions that are screened for in healthcare settings (DeCock 1998). Consistent with other human rights scholars and public health researchers, we argue that potential social risks women could experience after HIV testing make HIV a disease that is different from other conditions that are screened for in healthcare settings (Csete et al 2004, Rennie and Behets 2006, Bennett 2007, Gruskin et al 2008). Therefore, the three Cs and a rights-based approach should remain important aspects guiding the development of HIV testing policies.…”

Section: Introductionsupporting

confidence: 81%

HIV testing for pregnant women: A rights-based analysis of national policies

King

Maman

Wyckoff

et al. 2012

Global Public Health

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Ethical and human rights concerns have been expressed regarding the global shift in policies on HIV testing of pregnant women. The main purpose of this research was to conduct a policy analysis using a human rights-based approach of national policies for HIV testing of pregnant women. We collected HIV testing policies from 19 countries including: Cambodia, China, Guyana, Haiti, India, Jamaica, Kenya, Moldova, Papua New Guinea, Russian Federation, South Africa, Sudan, Swaziland, Tanzania, Ukraine, United States, Uzbekistan, Zambia and Zimbabwe. We analysed the HIV testing policies using a standardised framework that focused on government obligations to respect, protect and fulfil. Our results highlight the need for more attention to issues of pregnant women's autonomy in consenting to HIV testing, confidentiality in antenatal care settings and provision of counselling and care services. We conclude with a discussion about potential implications of the current testing policies and provide recommendations for ways that HIV testing policies can more effectively uphold the human rights of pregnant women.

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Section: Introductionsupporting

confidence: 81%

HIV testing for pregnant women: A rights-based analysis of national policies

King

Maman

Wyckoff

et al. 2012

Global Public Health

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“…However, health professionals felt strongly that an informed choice model should be followed and were strongly against mandatory screening, as found in other studies. 69 Of interest, however, in line with other research, 22,27,[30][31][32]41,44,75,82 few parents were aware that screening was optional, highlighting a disconnect between how midwives wish to practise and how screening is perceived by many parents.…”

Section: Discussionmentioning

confidence: 91%

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Ulph

Wright

Dharni

et al. 2017

Health Technol Assess

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BackgroundParticipation in the UK Newborn Bloodspot Screening Programme (NBSP) requires parental consent but concerns exist about whether or not this happens in practice and the best methods and timing to obtain consent at reasonable cost.ObjectivesTo collate all possible modes of prescreening communication and consent for newborn (neonatal) screening (NBS); examine midwives’, screening professionals’ and users’ views about the feasibility, efficiency and impact on understanding of each; measure midwives’ and parents’ preferences for information provision; and identify key drivers of cost-effectiveness for alternative modes of information provision.DesignSix study designs were used: (1) realist review – to generate alternative communication and consent models; (2) qualitative interviews with parents and health professionals – to examine the implications of current practice for understanding and views on alternative models; (3) survey and observation of midwives – to establish current costs; (4) stated preference surveys with midwives, parents and potential future parents – to establish preferences for information provision; (5) economic analysis – to identify cost-effectiveness drivers of alternative models; and (6) stakeholder validation focus groups and interviews – to examine the acceptability, views and broader impact of alternative communication and consent models.SettingProviders and users of NBS in England.ParticipantsStudy 2: 45 parents and 37 health professionals; study 3: 22 midwives and eight observations; study 4: 705 adults aged 18–45 years and 134 midwives; and study 6: 12 health-care professionals and five parents.ResultsThe realist review identified low parental knowledge and evidence of coercive consent practices. Interview, focus group and stated preference data suggested a preference for full information, with some valuing this more than choice. Health professionals preferred informed choice models but parents and health professionals queried whether or not current consent was fully informed. Barriers to using leaflets effectively were highlighted. All studies indicated that a ‘personalised’ approach to NBS communication, allowing parents to select the mode and level of information suited to their learning needs, could have added value. A personalised approach should rely on midwife communication and should occur in the third trimester. Overall awareness was identified as requiring improvement. Starting NBS communication by alerting parents that they have a choice to make and telling them that samples could be stored are both likely to enhance engagement. The methods of information provision and maternal anxiety causing additional visits to health-care professionals were the drivers of relative cost-effectiveness. Lack of data to populate an economic analysis, confirmed by value of information analysis, indicated a need for further research.LimitationsThere are some limitations with regard to the range of participants used in studies 2 and 3 and so caution should be exercised when interpreting some of the results.ConclusionsThis project highlighted the importance of focusing on information receipt and identified key communication barriers. Health professionals strongly preferred informed consent, which parents endorsed if they were made aware of sample storage. Uniform models of information provision were perceived as ineffective. A choice of information provision was supported by health professionals and parents, which both enhances cost-effectiveness and improves engagement, understanding and the validity of consent. Remaining uncertainties suggest that more research is needed before new communication modes are introduced into practice. Future research should measure the impact of the suggested practice changes (informing in third trimester, information toolkits, changed role of midwife).Trial registrationCurrent Controlled Trials ISRCTN70227207.FundingThis project was funded by the NIHR Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 21, No. 55. See the NIHR Journals Library website for further project information.

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“…This study supports the evolving position of a policy in which there is a strong recommendation of NBS for all children, and when parents are initially unwilling for this to be undertaken, that care should be taken to ensure that they are fully aware of the potential benefits and negligible possibility of harm. Any such policy, and the reasons behind it, should be made transparent and explicit,27 and in implementing this approach clinicians must be mindful to ensure that the “liberty to influence” parents is not translated into a “duty to persuade” 5. Just as information provision will become more complex as NBS expands, so will the evaluation of potential tensions between parental autonomy, interests of the child and the views of health professionals.…”

Section: Resultsmentioning

confidence: 99%

Information and consent for newborn screening: practices and attitudes of service providers

Kerruish

Webster²,

Dickson

2008

J Med Ethics

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When the results of this survey are considered in conjunction with existing evidence there appears to be a consensus that good quality information in the prenatal period should be an integral part of any NBS programme. The issue of consent is more complex and there is less agreement on the preferred degree of parental involvement in decisions to allow babies to undergo NBS. A policy that both strongly recommends NBS but also allows parental choice appears to be most consistent with the views of LMC in this survey.

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Routine antenatal HIV testing and informed consent: an unworkable marriage?

Cited by 23 publications

References 14 publications

HIV testing for pregnant women: A rights-based analysis of national policies

HIV testing for pregnant women: A rights-based analysis of national policies

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Information and consent for newborn screening: practices and attitudes of service providers

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