1. Tuberculosis and the Ethics of Shared Responsibility Ross E.G. Upshur, BA(HONS), MA, MD, MSc, CCFP, FRCPC Canada Research Chair in Primary Care Research Professor Department of Family and Community Medicine University of Toronto 16TH ANNUAL CONFERENCE OF THE UNION-NORT​H AMERICA REGION San Antonio February 2012

2. Learning objective Participants will be able to: Make clinical and programmatic decisions which will serve tuberculosis patients based on an understanding of the relationship between ethical values, human rights and disease control

7. The Challenge Responding to drug-resistant tuberculosis is one of the most profound challenges facing global health. Our response to the emergence of drug-resistant TB is profoundly ethical as it raises issues of how justice and human rights are realized in our collective response to a disease. It also underscores how the global community responds to its most disadvantaged members.

8. What does it mean to know a disease? What is disease? Standard nomenclatures or approaches to knowing in medicine On any standard, I argue we “know” more about TB than any other human affliction. The question: Why has this not made a difference?

14. Why be concerned with ethics? Decision-makers and clinicians need a moral compass Difficult decisions will have to be made. How, why, when & by whom? Accountability and Justification essential. 14

15. 15 Why has tuberculosis been neglected by ethicists? 1.Infectious Diseases no longer considered relevant 2.Ethics concerned with high technology 3.The other 4.Complexity

16. 16 Why is ethics important to Tuberculosis control? Tuberculosis raises unique ethical issues Proper treatment and programmatic decisions require integration of normative and empirical considerations Challenge traditional and familiar concepts (e.g. autonomy, physician- patient confidentiality) Universal vulnerability

17. 17 Integration of Levels of Ethical Reflection Personal Ethics Clinical Ethics Professional Ethics Organizational Ethics Public Health Ethics Global Health Ethics

18. Which Values? Autonomy/ Respect for persons Beneficence Non-maleficence Justice

19. Which Values? Reciprocity Solidarity Social Justice Trust Common Good Arguments

20. Human Rights Enshrine ethical norms into legally enforceable instruments Internationally agreed upon sets of principles and norms contained in treaties, conventions, declarations, resolutions etc Government obligations to respect, protect and fulfill these obligations Rights law defines what governments can do to us, cannot do to us and should do for us

21. TB Patients Bill of Rights – Rights to: Care, Dignity, Information, Choice, Confidence, Justice, Organization, Security – Responsibility to: share information, follow treatment, contribute to community health, solidarity

22.  Ethical Decision-Making Processes are: Open and Transparent ReasonableInclusiveResponsiveAccountable Address issues of power imbalance 22 Ethical Processes

23. Drug-resistant TB, particularly the emergence of XDR-TB, is evidence of a new form of regression: we have taken the curable and made it nearly incurable. The tendency has been to blame the most vulnerable and powerless – the patients who were unable, for a multitude of reasons, to follow treatment through to completion. It is time to recognize that we collectively bear responsibility for this.

24. The serious task of stopping the progression to complete drug resistance is also a collective responsibility of all involved in health care. If we cannot manage a disease as well known as TB, we have little justification to be stewards of the significant amount of resources given to health care globally.