Data, Ethics And Other Research Reports

Data ethics encompasses the moral obligations of gathering, protecting, and using personally identifiable information and how it affects individuals. Research ethics committees are able provide guidance on this and will review proposed data management plans when reviewing research protocols. You need to be aware of legal (protection of personal information laws eg. POPI, GDPR) and other frameworks (good practice models), as you are required to adhere to them depending on the country in which you are based.

Strive to collect the minimum viable amount of data, so you’re taking as little as possible from your participants while making a difference. Although special consideration must be given to sharing of data, and a material transfer agreement is advised, data ethics are summed up in five (5) principles:

Data ownership

It is unethical to collect someone’s personal data without their consent.

Transparency

Data subjects have a right to know how you plan to collect store and use their data

Privacy

Data participants should be confident that their information will be protected and kept private and confidential, particularly their personal identification information and details.

Intention

Before collecting data, ask yourself why you need it, what you’ll gain from it, and what changes you’ll be able to make after analysis. Do not collect unnecessary data that does not further the research or apply to the problem being investigated.

Data outcomes

Data analysis outcomes can cause harm inadvertently to individuals or a group

BY YOLISWA NTSEPE (MA, PhD)
ADOLESCENT PROGRAMMES MANAGER

UPDATED NOV 22, 2023

TABLE OF CONTENTS:

  1. why adolescents?
  2. where do adults fit in?
  3. research methods and designs
  4. ethical concerns with adolescents
  5. protocol development
  6. adolescent friendly site assessment
  7. adolescent peer supporters
  8. implementation frameworks
  9. standard operating procedures
  10. data collection
  11. dissemination

REFERENCES & ADDITIONAL RESOURCES: