Three Guiding Principles of Belmont Report
1) Respect for persons (cannot use people without acknowledging their agency, values & their human being-ness
2) Beneficence (balance harm & benefits; has to be a benefit doing the study, whether that is a solution or knowledge gain)
3) Justice (Cannot overburden 1 section of a ppn or use more participants than needed to get results)
Ethics of Informed Consent Concerning Vulnerable Ppns
- Children, people with cognitive/developmental disabilities (dementia) and people susceptible to coercion or influence (incarcerated ppl)
- Require special protection
- Consent of caregiver/guardian and/or assent
Consent when avoiding participant awareness of being watched
- Asking for informed consent before the study in certain cases affects the data, as behaviours could vary due to participants knowing they are being observed
- You need to ask for consent afterwards and participant may say no, in which case the data must be destroyed
Necessary consideration for observational studies
- Public settings do not always mean public
- A public washroom is still a private space and conducting a research in such an environment can be highly unethical, unless following special measures to ensure ethics and privacy are respected
Ethical issues of research being completed ON Indigenous Populations rather than WITH
- There is a lack of respect
- Often treated like lab rats
- Researchers will have minimal contact with communities, often not sharing results of their study and ignoring what communities say (studies on substance abuse in these communities are being done multiple times, regardless of elders saying they are aware on this issue and would rather work with researchers to find solutions)
- Used research is not validated by Indigenous communities (survey questions may be created disregarding meanings differing by community)
What mistakes have researchers made in conducting research or communicating results with Indigenous communities?
They ignore the needs and values of communities
Why might qualitative methods be most appropriate for community research partnerships?
- Ppl are better represented in qualitative methods as numbers and scales don’t accurately represent ppl
- They let ppl speak for themselves
- It is easier to bring back to community to look at with them
Better Practices for Research with indigenous Communities
Relational Ethics Processes and examining Potential Bias
Relational Ethics Processes
Using these processes lead to accountable research to communities; makes room for partnership, reciprocity, humility, care, inclusion, and recognition of the value of Indigenous knowledge (avoids researchers pretending to be experts on communities they are outsiders to)
Potential Biases
Focus more on resiliency, strength and a more holistic perspective; opportunity for seeing cultural context as important for interpretation and consulting communities for results before dissemination
