Towards an appropriate ethics framework for Health and Demographic Surveillance Systems (HDSS): learning from issues faced in diverse HDSS in sub-Saharan Africa

Hinga, Alex; Molyneux, Sassy; Marsh, Vicki

doi:10.1136/bmjgh-2020-004008

Cited by 7 publications

(7 citation statements)

References 83 publications

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“…The larger project included three interlinked phases as outlined in the Mapping-Framing-Shaping framework for empirical bioethics research projects [ 37 ]. The Mapping phase involved literature review and formative research in diverse sites across sub-Saharan Africa to identify key ethical issues in HDSS [ 41 ]. It highlighted verbal autopsy as an ethically sensitive component of HDSS.…”

Section: Methodsmentioning

confidence: 99%

The ethical implications of verbal autopsy: responding to emotional and moral distress

et al. 2021

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Background Verbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the ethical issues identified. Methods This research was based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers). Results The use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers. Conclusions The collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy.

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Section: Methodsmentioning

confidence: 99%

The ethical implications of verbal autopsy: responding to emotional and moral distress

et al. 2021

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“…HDSS are open population cohorts and collect data on births and deaths that occur within a small geographical area quarterly to biannually. Each HDSS had their own informed consent procedure (either written or verbal), which in most sites was at the household level 13 . Access to data for Agincourt, Basse, Farafenni, Kersa, Kisesa and Kisumu was arranged through data‐sharing agreements with the London School of Hygiene and Tropical Medicine (LSHTM).…”

Section: Methodsmentioning

confidence: 99%

Pregnancy‐related mortality up to 1 year postpartum in sub‐Saharan Africa: an analysis of verbal autopsy data from six countries

Gazeley

Reniers

Prieto

et al. 2023

BJOG

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ObjectiveTo compare the causes of death for women who died during pregnancy and within the first 42 days postpartum with those of women who died between >42 days and within 1 year postpartum.DesignOpen population cohort (Health and Demographic Surveillance Systems).SettingTen Health and Demographic Surveillance Systems (HDSS) in The Gambia, Kenya, Malawi, Tanzania, Ethiopia and South Africa.Population2114 deaths which occurred within 1 year of the end of pregnancy where a verbal autopsy interview was conducted from 2000 to 2019.MethodsInterVA5 and InSilicoVA verbal autopsy algorithms were used to attribute the most likely underlying cause of death, which were grouped according to adapted International Classification of Diseases‐Maternal Mortality categories. Multinomial regression was used to compare differences in causes of deaths within 42 days versus 43–365 days postpartum adjusting for HDSS and time period (2000–2009 and 2010–2019).Main outcome measuresCause of death and the verbal autopsy Circumstances of Mortality Categories (COMCATs).ResultsOf 2114 deaths, 1212 deaths occurred within 42 days postpartum and 902 between 43 and 365 days postpartum. Compared with deaths within 42 days, deaths from HIV and TB, other infectious diseases, and non‐communicable diseases constituted a significantly larger proportion of late pregnancy‐related deaths beyond 42 days postpartum, and health system failures were important in the circumstances of those deaths. The contribution of HIV and TB to deaths beyond 42 days postpartum was greatest in Southern Africa. The causes of pregnancy‐related mortality within and beyond 42 days postpartum did not change significantly between 2000–2009 and 2010–2019.ConclusionsCause of death data from the extended postpartum period are critical to inform prevention. The dominance of HIV and TB, other infectious and non‐communicable diseases to (late) pregnancy‐related mortality highlights the need for better integration of non‐obstetric care with ante‐, intra‐ and postpartum care in high‐burden settings.

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“…Even if adequate control groups are maintained for a study, those people are involved in other studies, and over the course of decades of being studied, it is certain that there is no unaffected control group, if that were even ethically feasible. Conversely, by only observing and not intervening to address adverse population health findings, it will expose the HDSS to an ethical dilemma [ 67 , 68 ].…”

Section: State Of the Artmentioning

confidence: 99%

“…The long-term engagement with populations in HDSS does raise ethical challenges because of the burden for participants of repeated rounds of data collection, ancillary care responsibilities and the expectations of local and direct benefits to individuals and communities linked to long-term engagement [ 69 , 70 ]. In recent years there has been a heightened awareness of the importance of investment in community engagement and the need for attention to the costs and benefits of data collection to participants as well as data access and use [ 67 , 71 ].…”

Section: State Of the Artmentioning

confidence: 99%

Health and demographic surveillance systems in low- and middle-income countries: history, state of the art and future prospects

Herbst

Juvekar²,

Jasseh

et al. 2021

Global Health Action

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Health and Demographic Surveillance Systems (HDSS) have been developed in several low- and middle-income countries (LMICs) in Africa and Asia. This paper reviews their history, state of the art and future potential and highlights substantial areas of contribution by the late Professor Peter Byass. Historically, HDSS appeared in the second half of the twentieth century, responding to a dearth of accurate population data in poorly resourced settings to contextualise the study of interventions to improve health and well-being. The progress of the development of this network is described starting with Pholela, and progressing through Gwembe, Balabgarh, Niakhar, Matlab, Navrongo, Agincourt, Farafenni, and Butajira, and the emergence of the INDEPTH Network in the early 1990’s The paper describes the HDSS methodology, data, strengths, and limitations. The strengths are particularly their temporal coverage, detail, dense linkage, and the fact that they exist in chronically under-documented populations in LMICs where HDSS sites operate. The main limitations are generalisability to a national population and a potential Hawthorne effect, whereby the project itself may have changed characteristics of the population. The future will include advances in HDSS data harmonisation, accessibility, and protection. Key applications of the data are to validate and assess bias in other datasets. A strong collaboration between a national HDSS network and the national statistics office is modelled in South Africa and Sierra Leone, and it is possible that other low- to middle-income countries will see the benefit and take this approach.

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Towards an appropriate ethics framework for Health and Demographic Surveillance Systems (HDSS): learning from issues faced in diverse HDSS in sub-Saharan Africa

Cited by 7 publications

References 83 publications

The ethical implications of verbal autopsy: responding to emotional and moral distress

The ethical implications of verbal autopsy: responding to emotional and moral distress

Pregnancy‐related mortality up to 1 year postpartum in sub‐Saharan Africa: an analysis of verbal autopsy data from six countries

Health and demographic surveillance systems in low- and middle-income countries: history, state of the art and future prospects

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