Participatory Research with Native Community of Kahnawake Creates Innovative Code of Research Ethics

Participatory research maximises community and lay involvement

“…This increases the cultural and internal validity of the results and so strengthens the science; minimises harms (for example, external stigmatisation of individuals and the community, self stigmatisation, and community disruption); and maximises benefits 7 10 13 21 25 26. Important outcomes of ethically sound participatory research have included ongoing capacity building of collaborators—for example, training, and better infrastructure, data collection, and storage—stronger receptivity to collaboration by researchers, stronger community voice in policy, and greater mutual trust.…”

“…Australian and Canadian codes describe the ethical conduct of research with Native communities in participatory research terms 19 20. Universities and Native organisations and communities have developed ethical guidelines and checklists 7 10 13 21 22. Most guidelines cover all four phases of research—design, implementation, analysis, and dissemination—and have underlying principles and obligations similar to covenantal or familial ethics 18 23…”

“…These local codes should identify the ethical and political issues; reflect local culture, needs, and interests; and maximise close collaboration between the researcher and community partners 10. The partners should agree on their roles and responsibilities, desired outcomes of the research, measures of validity, control of the use of data and funding, and channels to disseminate findings 1 7 10 12 13 24. Some communities, for example, have requested—and researchers have agreed—that publications will include dissenting views of both researchers and community, if the partners cannot agree on the interpretation 10…”

“…It participated in (a) developing the goal and objectives, (b) planning and implementing the intervention and evaluation, (c) outlining the obligations of researchers and community in the code of research ethics,10 (d) collecting and interpreting data, (e) reviewing lay and scientific publications, and (f) disseminating results. Their collective wisdom adds a perspective that broadens interpretations, increases the project's effectiveness, helps to decrease harm and improves the credibility of oral and written results, which saves the community from potential stigmatisation.…”

Between the needy and the greedy: the quest for a just and fair ethics of clinical research

“…Thus understood, states of social vulnerability fall beyond the domain of self-determination and they lead to significantly increased exposure to risks caused by situations of social exclusion. By reviewing the scholarly literature on ethical conflicts within international biomedical research in poor and low-income countries, Lorenzo24 indentified some contextual factors that generate social vulnerability in biomedical research:poverty and low educational level among the population25–28;difficulty in accessing healthcare29 30;female sex31 32;racial and ethnic questions33 34;low capacity for research in the country 35–37…”