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Tiered informed consent: respecting autonomy, agency and individuality in Africa
  1. Nicki Tiffin1,2,3
  1. 1 Wellcome Centre for Infectious Disease Research in Africa, University of Cape Town, Cape Town, South Africa
  2. 2 Division of Computational Biology, University of Cape Town, Cape Town, South Africa
  3. 3 Centre for Infectious Disease Epidemiology and Research, University of Cape Town, Cape Town, South Africa
  1. Correspondence to Professor Nicki Tiffin; nicki.tiffin{at}uct.ac.za

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  • There has been a rapid increase in data-generating health research being undertaken on the African continent.

  • Given past ethical failures for research undertaken in Africa, ongoing and future studies must implement an ethical stringency that ensures agency and protection for all African stakeholders.

  • Appropriately informed broad consent, coupled with a suitable governance structure, may be feasible for populations with high agency and institutionalised protection of personal rights, but in low-income and middle-income countries in Africa substantial proportions of the population remain vulnerable.

  • Funders and researchers should ensure that the protection of participants takes precedence over other agendas; and the agency and autonomy of vulnerable African participants in research should be protected through provision of sufficient study information and an individualised, tiered consent process.

In the developed world, societal awareness of data privacy and data protection rights is rising, particularly fuelled by recent high-profile cases of unconsented secondary data use1 2 and increased recognition of reidentification risks.3 Accordingly, updated legislation ensures transparency and gives individuals greater choice and control over the use, reuse and deletion of their data (eg, the General Data Protection Regulation in the European Union).4 In this environment, researchers are engaging with a robust participant population that is generally well-informed and has agency and institutionalised support to ensure their privacy rights: the luxury of individuals understanding and determining the destination, use and reuse of their personal data and biospecimens is surely one that comes with food security, good access to healthcare, personal safety and adequate education. Evolving processes such as Dynamic Consent reflect this increasing autonomy by facilitating ongoing online engagement between researchers and participants over time.5 …

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