Résumés
Abstract
The COVID-19 pandemic has had a global effect. The disproportionate impact on Indigenous peoples and racialized groups has brought ethical challenges to the forefront in research and clinical practice. In Canada, the Tri-Council Policy Statement (TCPS2), and specifically the principle of justice, emphasizes additional care for individuals “whose circumstances make them vulnerable”, including Indigenous and racialized communities. In the absence of race-based data to measure and inform health research and clinical practice, we run the risk of causing more harm and contributing to ongoing injustices. However, without an accepted framework for collecting, maintaining, and reporting race-based data in Canada, more guidance is needed on how to do this well. Importantly, a framework for collecting race-based data should build on existing guidance from Indigenous and other structurally marginalized communities, the TCPS2, recommendations from the World Health Organization, and involve relevant stakeholders. In this paper, we describe historical examples of unethical studies on Indigenous and racialized groups, discuss the challenges and potential benefits of collecting race-based data, and conclude with objectives for a pan-Canadian framework to inform how race-based data is collected, stored, and accessed in health research.
Keywords:
- health equity,
- diversity,
- inclusion,
- decolonization,
- health services,
- social determinants of health,
- anti-racism,
- justice
Résumé
La pandémie de COVID-19 a eu un effet mondial. L’impact disproportionné sur les peuples autochtones et les groupes racialisés a mis les défis éthiques au premier plan dans la recherche et la pratique clinique. Au Canada, l’Énoncé de politique des trois Conseils (EPTC2), et plus particulièrement le principe de justice, met l’accent sur les soins supplémentaires à apporter aux personnes « dont les circonstances les rendent vulnérables », notamment les communautés autochtones et racialisées. En l’absence de données fondées sur la race pour mesurer et éclairer la recherche en santé et la pratique clinique, nous courons le risque de causer plus de tort et de contribuer à des injustices continues. Toutefois, en l’absence d’un cadre accepté pour la collecte, la tenue à jour et la communication des données fondées sur la race au Canada, il est nécessaire d’obtenir davantage de conseils sur la façon de bien faire les choses. Il est important de noter qu’un cadre pour la collecte de données fondées sur la race devrait s’appuyer sur les directives existantes des communautés autochtones et d’autres communautés structurellement marginalisées, sur l’EPTC2, sur les recommandations de l’Organisation mondiale de la santé et sur la participation des intervenants concernés. Dans le présent document, nous décrivons des exemples historiques d’études non éthiques sur les Autochtones et les groupes racialisés, nous discutons des défis et des avantages potentiels de la collecte de données fondées sur la race, et nous concluons par les objectifs d’un cadre pancanadien visant à informer la façon dont les données fondées sur la race sont recueillies, stockées et accessibles dans la recherche en santé.
Mots-clés :
- équité en santé,
- diversité,
- inclusion,
- décolonisation,
- services de santé,
- déterminants sociaux de la santé,
- antiracisme,
- justice
Veuillez télécharger l’article en PDF pour le lire.
Télécharger
Parties annexes
Remerciements / Acknowledgements
AFR est le directeur scientifique de Sepsis Canada, un réseau financé par les IRSC. LS est financée par la Arnold L. Johnson Chair in Health Care Ethics, une chaire à l’Université McMaster. FS n’a aucun conflit d’intérêts à signaler.
AFR is the Scientific Director of Sepsis Canada, a CIHR-funded network. LS is funded by the Arnold L. Johnson Chair in Health Care Ethics, an endowed Chair at McMaster University. FS has no conflicts of interest to report.
Bibliography
- 1. Williamson EJ, Walker AJ, Bhaskaran K, et al. Factors associated with COVID-19-related death using OpenSAFELY. Nature. 2020;584(7821):430-36.
- 2. Gaynor TS, Wilson ME. Social vulnerability and equity: the disproportionate impact of COVID-19. Public Adm Rev. 2020;80(5):832-38.
- 3. Tolchin B, Hull SC, Kraschel K. Triage and justice in an unjust pandemic: ethical allocation of scarce medical resources in the setting of racial and socioeconomic disparities. J Med Ethics. 2021;47(3):200-2.
- 4. Venkatapuram S. Ethics and global health emergencies. Curr Hist. 2022;121(838):291-97.
- 5. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa; 2022.
- 6. Bailey ZD, Krieger N, Agénor M, Graves J, Linos N, Bassett MT. Structural racism and health inequities in the USA: evidence and interventions. The Lancet. 2017;389(10077):1453-63.
- 7. NIH. NIH Policy on Reporting Race and Ethnicity Data: Subjects in Clinical Research. NHLBI; 8 Aug 2001.
- 8. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. Introduction. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa; 2022.
- 9. WHO. Health Equity; 2010.
- 10. CIHI. Guidance on the Use of Standards for Race-Based and Indigenous Identity Data Collection and Health Reporting in Canada. Ottawa; 2022.
- 11. National Collaborating Centre for Determinants of Health. Let’s Talk: Racism and Health Equity. Antigonish, NS: St. Francis Xavier University; 2018.
- 12. Scharff DP, Mathews KJ, Jackson P, Hoffsuemmer J, Martin E, Edwards D. More than Tuskegee: understanding mistrust about research participation. J Health Care Poor Underserved. 2010;21(3):879-97.
- 13. Brandt AM. Racism and research: the case of the Tuskegee Syphilis Study. Hastings Cent Rep. 1978;8(6):21-29.
- 14. Mosby I. Administering colonial science: nutrition research and human biomedical experimentation in Aboriginal communities and residential schools, 1942–1952. Hist Sociale / Social Hist. 2013;46(1):145-72.
- 15. Browne AJ, Hill E, Lavallee B, Lavoie JG, Logan McCallum MJ. Out of sight: a summary of the events leading up to Brian Sinclair’s death, the inquest that examined it and the interim recommendations of the Brian Sinclair Working Group. Brian Sinclair Working Group; Sept 2017.
- 16. Boyer Y, Bartlett J. External review. Tubal ligation in the Saskatoon Health Region: The lived experience of Aboriginal women. Saskat Health Reg; 22 July 2017.
- 17. Gorringe S. Aboriginal culture is not a problem. The way we talk about it is. The Guardian. 15 May 2015.
- 18. Ranganathan M, Bhopal R. Exclusion and inclusion of nonwhite ethnic minority groups in 72 North American and European cardiovascular cohort studies. PLOS Med. 2006;3(3):e44.
- 19. Bartlett C, Doyal L, Ebrahim S, et al. The causes and effects of socio-demographic exclusions from clinical trials. Health Technol Assess Winch Engl. 2005;9(38):iii-iv, ix-x, 1-152.
- 20. Xiao H, Vaidya R, Liu F, Chang X, Xia X, Unger JM. Sex, racial, and ethnic representation in COVID-19 clinical trials: a systematic review and meta-analysis. JAMA Intern Med. Published online 5 Dec 2022.
- 21. Gopaldas A, DeRoy G. An intersectional approach to diversity research. Consum Mark Cult. 2015;18(4):333-64.
- 22. Crenshaw K. Demarginalizing the intersection of race and sex: a black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. Univ Chic Leg Forum. 2015;1989:8.
- 23. Luna F, Vanderpoel S. Not the usual suspects: addressing layers of vulnerability. Bioethics. 2013;27(6):325-32.
- 24. Hasnain‐Wynia R, Baker DW. Obtaining data on patient race, ethnicity, and primary language in health care organizations: current challenges and proposed solutions. Health Serv Res. 2006;41(4p1):1501-18.
- 25. Government of Ontario. Visible Minorities and Ethnicity in Ontario. 2009.
- 26. Government of Canada. First Nations People, Métis and Inuit in Canada: Diverse and Growing Populations. 20 March 2018.
- 27. Datta G, Siddiqi A, Lofters A. Transforming race-based health research in Canada. CMAJ. 2021;193(3):E99-100.
- 28. Moscou S, Anderson MR, Kaplan JB, Valencia L. Validity of racial/ethnic classifications in medical records data: an exploratory study. Am J Public Health. 2003;93(7):1084-86.
- 29. OHCHR. Human Rights Indicators. 2016.
- 30. The First Nations Information Governance Centre. The First Nations Principles of OCAP®.
- 31. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. Chapter 9: Research Involving the First Nations, Inuit and Métis Peoples of Canada Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa; 2022.
- 32. Stanbrook MB, Salami B. CMAJ’s new guidance on the reporting of race and ethnicity in research articles. CMAJ. 2023;195(6):E236-38.
- 33. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. Chapter 4: Fairness and Equity in Research Participation Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa; 2022.
- 34. REDE4 Black Lives. The Protocol. 2023.
- 35. Deyrup A, Graves JL. Racial biology and medical misconceptions. N Engl J Med. 2022;386:501-3.
- 36. Fawzy A, Wu TD, Wang K, et al. Racial and ethnic discrepancy in pulse oximetry and delayed identification of treatment eligibility among patients with COVID-19. JAMA Intern Med. 2022;182(7):730-38.