Confidentiality & Privacy

Respecting privacy and confidentiality in the context of focus group consultations, particularly if the research is within a close-knit community and therefore requires careful reflection.

  • Possibility of friends or siblings in the group.
  • Potential difficulties after the group have disbanded.
  • Peer researchers impact on participants.

Researchers need to be aware of legislative and customary law regarding the age of majority of the participants with whom they are working.

Privacy regulations and acts:

Since 2018 there has been a wave of regional data privacy regulations which aim to make data, particularly data online more secure and protected. These regulations include:

  • GDPR – Europe’s General Data Protection Regulations
  • POPI – South Africa’s Protection of personal information
  • LGPD – Brazil’s Lei Geral de Proteção de Dados
  • CCPA – California Consumer Privacy Act

You should note that the GDPR applies to any organization that processes personal information about European Economic Area (EEA) citizens regardless of where it’s based in the world. However, the POPIA only applies to companies based in South Africa or those that process personal data within South African borders.

POPI covers not only the information you collect about individuals but also about companies and other types of organization. POPI classifies a separate subcategory of personal data, known as special personal information, which is more sensitive and therefore subject to stricter requirements. POPI applies to the personal information of any individual, regardless of nationality, as long as the information is gathered or processed in SA. This information mainly relates to an individual’s:

  • religious or philosophical beliefs,
  • race or ethnic origin
  • trade union membership
  • political persuasion
  • health
  • sex life or sexual orientation
  • physical, physiological or behavioral characteristics (biometric data)

Specific consent rules also apply to collection of data about children, aged 17 and under, where you normally need the consent of a competent person, such as a parent or guardian.

Key questions for you to ask:

How will adolescent privacy and confidentiality be respected?

  • How will you ensure adolescents and their families cannot be identified?
  • How will privacy be attended to in the research setting?
  • Do you plan to allow parents/guardians/caregivers or persons in authority to be present when research is being conducted with adolescents? Why? What impact could this have on the participants’ involvement in the research or the information they may share?
  • How will you respond if parents/guardians/caregivers or persons in authority will not allowed the participants to be interviewed on their own?
  • What will the gender and number of interviewers in relations to the participants being interviewed? Why?

How will you attend to concerns about participant safety that arise during the research?

  • How will you ensure that the participants and parents/guardians/caregivers or persons in authority understand the circumstances under which confidentiality should be breached?
  • What actions will you take in response to a participant’s disclosure of harm or abuse?
  • How will you ensure the participants are informed with regard to these and their views are taken into account?
  • Who else will you need to inform about these actions?

How will you ensure that research findings are disseminated safely?

  • How will you ensure that the identities of the participants, their families and communities are not revealed?

How will ensure your data is safely stored and destroyed?

  • What strategies do you have in place for the safe and secure storage of data?
  • When and how will you ensure the secure destruction of all nominal information?
  • The Protection of Personal Information Act (POPI Act No.4 of 2013) of South Africa gives guidance on how to manage and protect information of individuals. Also refer to (DATA SECURITY )

Are there additional strategies that would enhance research staff’s capacity to respect the participants’ privacy and confidentiality?

  • To what extent would developing and implanting explicit protocols for research staff regarding privacy and confidentiality be helpful?
  • Have research staff received training relevant to privacy and confidentiality in research involving adolescents?

BY YOLISWA NTSEPE (MA, PhD)
ADOLESCENT PROGRAMMES MANAGER

UPDATED NOV 22, 2023

TABLE OF CONTENTS:

REFERENCES & ADDITIONAL RESOURCES:

Adapted from https://childethics.com/wp-content/uploads/2013/10/ERIC-compendium-Ethical-Guidance-Privacy-and-confidentiality-section-only.pdf

Slack, C.M. and Strode, A.E., 2016. But is this really the ‘parent’ or ‘guardian’? Practical strategies for consent to child research in South Africa. South African journal of bioethics and law, 9(1), pp.35-38.

Wallace, M., Strode, A., Slack, C., Ronan, A. and Bekker, L.G., 2010. Ethical-legal challenges in conducting HIV prevention trial research with adolescents: A South African case study of tool development. Tropical Medicine & International Health, 15(8).