Invited Peer Commentary: Research Site Anonymity in Context

Akintola S. (2018). Legal implications of data sharing in biobanking research in low-income settings: The Nigerian experience. South African Journal of Bioethics and Law, 11(1), 15–19. https://doi.org/10.7196/SAJBL.2018.v11i1.601

Allen M. (2017). The sage encyclopedia of communication research methods (Vols. 1-4). Sage Publications, Inc. https://doi.org/10.4135/9781483381411

Aramoana J. Koea J. Committe C. (2019). An integrative review of the barriers to indigenous peoples participation in biobanking and genomic research. Journal of Global Oncology, 5, 1–9. https://doi.org/10.1200/JGO.18.00156

Ash S. L. Clayton P. H. (2009). Generating, deepening, and documenting learning: The power of critical reflection in applied learning. Journal of Applied Learning in Higher Education, 1(1), 25–48 https://files.eric.ed.gov/fulltext/EJ1188550.pdf.

Australian Institute of Aboriginal and Torres Strait Islander Studies (2020). AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research. Available at: https://aiatsis.gov.au/sites/default/files/2020-10/aiatsis-code-ethics.pdf

Belmont Report (1979). Available at: https://www.hhs.gov/ohrp/sites/default/files/the-belmont-report-508c_FINAL.pdf Accessed 23 March 2022.

Bhanot D. Singh T. Verma S. K. Sharad S. (2021). Stigma and Discrimination during COVID-19 Pandemic. Frontiers in Public Health, 8. https://doi.org/10.3389/fpubh.2020.577018. Available at: https://www.frontiersin.org/article/10.3389/fpubh.2020.577018

Chatfield K. Schroeder D. (2020). Ethical research in the COVID-19 era demands care, solidarity and trustworthiness. Research Ethics, 16(3-4), 1–4. https://doi.org/10.1177/1747016120945046

Chen H. Pang T. (2015). A call for global governance of biobanks. Bulletin of the World Health Organization, 93(2), 113–117. https://doi.org/10.2471/BLT.14.138420

Davies B. Savulescu J. (2019). Solidarity and responsibility in health care. Public Health Ethics, 12(2), 133–144. https://doi.org/10.1093/phe/phz008

Department of Health (2003). The National Health Act (Act 61 of 2003). Available at: https://www.gov.za/sites/default/files/gcis_document/201409/a61-03.pdf.

Department of Health (2015). Ethics in Health Research – Principles, processes and structures Available from: www.nhrec.org.za/index.php/grids-review?download = 10:doh-2015-ethics.%0A

Emanuel E. J. Wendler D. Killen J. Grady C. (2004). What makes clinical research in developing countries ethical? The benchmarks of ethical research. The Journal of Infectious Diseases, 189(5), 930–937. https://doi.org/10.1086/381709

Fong M. Braun K. L. Chang R. M. (2004). Native Hawaiian preferences for informed consent and disclosure of results from research using stored biological specimens. The Pacific Health Dialog, 11(2), 154–159.

Hickey A. Davis S. Farmer W. , et al. (2021). Beyond criticism of ethics review boards: Strategies for engaging research communities and enhancing ethical review processes. Journal of Academic Ethics. https://doi.org/10.1007/s10805-021-09430-4

Horton R. Lucassen A. (2019). Consent and autonomy in the genomics era. Current Genetic Medicine Reports, 7, 85–91. https://doi.org/10.1007/s40142-019-00164-9

Jegede A. (2009). Culture and genetic screening in Africa. Developing World Bioethics, 29(3), 128–137. https://doi.org/10.1111/j.1471-8847.2009.00259.x

Littler K. Millum J. Wassenaar D. R. (2014). The global forum for bioethics in research: Past, present and future. South African Journal of Bioethics and Law, 7(1), 5–8. https://doi.org/10.7196/SAJBL.312

Millum J. Campbell M. Luna F. , et al. (2019). Ethical challenges in global health-related stigma research. BMC Medicine, 17, 84. https://doi.org/10.1186/s12916-019-1317-6

Moodley K. Myer L. (2007). Health research ethics committees in South Africa 12 years into democracy. BMC Medical Ethics, 8, 1. https://doi.org/10.1186/1472-6939-8-1

Moodley K. Singh S. (2016). “It’s all about trust”: Reflections of researchers on the complexity and controversy surrounding biobanking in South Africa. BMC Medical Ethics, 17, 57. https://doi.org/10.1186/s12910-016-0140-2

Mthembu N. (2010). A Dream of Azania: Political and socio-economic struggles in post-apartheid South Africa. Reach Publishers. Available at: https://uir.unisa.ac.za/bitstream/handle/10500/23311/A%20dream%20of%20AZANIA.pdf?sequence = 3&isAllowed = y

Nduna M. Mayisela S. Balton S. , et al. (2022). Research site anonymity in context. Journal of Empirical Research on Human Research Ethics. March, 2022, https://doi.org/10.1177/15562646221084838

Nduna M. Tabane C. Khumalo I. P. Kheswa J. (2020). Research ethics in contexts of historical trauma in southern Africa (M. Nduna, C. Tabane, I. P. Khumalo, & J. Kheswa. YouTube: https://www.youtube.com/watch?v = CJY4Y5P06Mo&t = 48s

Ogunrin O. Woolfall K. Gabbay M. L. F. (2018). Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub- Saharan African setting. PLoS One, 20(4), e0195171. https://doi.org/10.1371/journal.%0Apone.0195171%0A

Posel D. Ross F. C. (2014). Opening up the quandaries of research ethics: Beyond the formalities of institutional ethical review. In Posel D. Ross F. C. (Eds.), Ethical quandaries of social research (pp. 1–26). HSRC Press.

Protection of Personal Information Act No. 4 of 2013 (2013). Available at: https://popia.co.za/

Rodgers C. (2002). Defining reflection: Another look at John Dewey and reflective thinking. The Teachers College Record, 104(4), 842–866. https://doi.org/10.1111/1467-9620.00181

Schön D. A. (1983). The reflective practitioner: How professionals think in action. Basic Books. 1983.

Singh, S., Cadigan, R. J., & Moodley, K. (2022). Research-related stakeholders' perspectives on sociocultural considerations in biobanking practice in South Africa. Biopreservation and Biobanking. Epub ahead of print. https://doi.org/10.1089/bio.2021.0149

Singh S. Wassenaar D. R. (2016). Contextualising the role of gatekeeper in social science research. South African Journal of Bioethics & Law, 9(1), 42–46. http://www.sajbl.org.za/index.php/sajbl/article/view/465

South African San Institute (2017). The San Code of Research Ethics. Available from: admin@sasi.org.za

Tindana P. de Vries J. Campbell M. , et al. (2015). Community engagement strategies for genomic studies in Africa: A review of the literature. BMC Medical Ethics, 16, 24. https://doi.org/10.1186/s12910-015-0014-z

Wassenaar D. R. Mamotte N. (2012). Ethical issues and ethics reviews in social science research. In Ferrero A. Korkut Y. Leach M. M. Lindsay G. Stevens M. J. (Eds.), The Oxford handbook of international psychological ethics (pp. 268–282). Oxford University Press. https://doi.org/10.1093/oxfordhb/9780199739165.013.0019

Wassenaar D. R. Slack C. M. (2016). How to learn to love your research ethics committee: Recommendations for psychologists. South African Journal of Psychology, 46(3), 306–315. https://doi.org/10.1177/0081246316654348

Wilkinson A. Slack C. Crews C. Singh N. Salzwedel J. Wassenaar D. (2021). How can research ethics committees help to strengthen stakeholder engagement in health research in South Africa? An evaluation of REC documents. South African Journal of Bioethics and Law, 14(1), 6–10. https://doi.org/10.7196/SAJBL.2021.v14i1.698

Wilkinson A. Slack C. Thabethe S. Salzwedel J. (2022). “It’s Almost as if Stakeholder Engagement is the Annoying ‘Have-to-do’…”: Can Ethics Review Help Address the “3 Ts” of Tokenism, Toxicity, and Tailoring in Stakeholder Engagement? Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/15562646221078415

WMA Declaration of Helsinki – Ethical principles for medical research involving human subjects (2013). 64th WMA General Assembly, Fortaleza, Brazil, October 2013. Available at: https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/ Accessed 23 March 2022.