Table 3

Key ethical issues in Health and Demographic Surveillance Systems

ThemeEthical considerationsEthical issues
Establishing a HDSSHave the HDSS area and populations been selected fairly? The need for collaborative partnerships.
  • Risks of selecting the most vulnerable areas and populations. Most HDSS are in rural and poor urban areas of sub-Saharan Africa and have limited integration with CRVS and other health information systems.

HDSS methodological designWhat are the objectives of the HDSS and how effective is the HDSS in meeting these objectives?
  • Unclear objectives, including that initial objectives of most HDSS have not been updated despite changes in HDSS functioning over time.

  • Risks of collecting incomplete or inaccurate data for example, where insufficient funding and cultural sensitivities may hinder regular enumerations and collection of accurate data on income, pregnancy status and cause of death.

Ethics review processesWhat ethical principles, theories and guidelines apply to the HDSS?
  • There is uncertainty over the appropriate ethics guidance for HDSS, leading to:

    • Ethics review processes being inconsistent across sites, including no annual ethics review and approval.

    • Default use of biomedical research ethics guidelines focusing on time limited individual-level issues only, when HDSS follow populations over time.

    • Practices of self-regulation, exempting harmful procedures from independent review.

    • Ethics review processes being unnecessarily burdensome.

Community engagementIs community engagement necessary? What community engagement activities are feasible/appropriate?
  • Use of poorly defined concepts, such as ‘HDSS community’ and insufficient resources for HDSS-specific community engagement, leading to risks that community engagement is unduly limited for example, information sharing only.

Informed consentRespect for individual autonomy and local community
  • Tensions between individual autonomy and enhancing social value, where individual written informed consent processes likely to compromise HDSS data quality and increase HDSS operating costs and burdens for residents and field workers (eg, interpretations of why a signature is needed may lead to refusals).

  • Procedures and feasibility of withdrawing from HDSS are unclear, which may limit this choice.

Data sharing and reporting ResultsWhat are the appropriate HDSS data governance systems? Who should access and use HDSS data?
  • HDSS collect, link, analyse and disseminate a wide range of sensitive data, generating potential risks to privacy and confidentiality including community stigmatisation from reporting sensitive community-level findings

  • Risk of damaging trust among HDSS stakeholders

  • Limited use of HDSS data

Benefits and burdensWhat are the benefits of HDSS and who are the beneficiaries?
What are the burdens of HDSS? Can they be minimised? Are burdens justified?
  • Risks of defining benefits narrowly, so that non-health benefits and beneficiaries of HDSS are unspecified

  • Inability to measure and enhance benefits or identify, weigh and respond to HDSS burdens.

  • Female residents, verbal autopsy respondents and interviewers often bear most burdens (time, insecurity, emotional distress) and little to no benefits.

  • Since HDSS data are mainly used for research purposes, researchers and global health modellers who gain direct benefits from using HDSS data (influence, career development, funding) bear the least burdens.

  • Overall risks of a disproportionate distribution of burdens.

  • CRVS, civil registration and vital statistics systems; HDSS, Health and Demographic Surveillance Systems .