Applying Bahá'í Principles to Address Current Ethics and Policy Debates in Organ Transplantation

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Applying Bahá'í Principles to Address Current Ethics and Policy Debates in Organ Transplantation Maryam Valapour, MD, MPP Center for Bioethics, University of Minnesota Division of Pulmonary and Critical Care Medicine, University of Minnesota Scientific Registry of Transplant Recipients, Minneapolis Medical Research Foundation

Disclosures Maryam Valapour, MD, MPP University of Minnesota No Conflicts of Interests Financial Disclosure: National Institutes of Health (NIH) Health Resources and Services Administration (HRSA)

Organ Transplantation: Global Enterprise The transplantation of solid organs, such as kidney, liver, heart or lung, is increasingly a regular component of health care all over the world, and is no longer a feature of health care in high-income countries alone. World Health Organization WHO, Human Organ and Tissue Transplantation: Report by the Secretariat, 2 May 2003.

Organ Transplantation: 2010 WHO Global Activity Estimates Organ Number Transplants Kidney 73,179 Liver 21,602 Heart 5,582 Lung 3,927 Pancreas 2,362 Small Bowel 227 Approximately 106,879 solid organs are transplanted each year, world-wide in more than 95 countries Transplants increased 2.12% from 2009 This represents less than 10% of the estimated need for transplants WHO, Global Observatory on Donation and Transplantation Activities, 2010.

Global Transplantation Activities of Solid Organs WHO, Global Observatory on Donation and Transplantation Activities, 2010.

Organ Transplantation: Procedural and Implementation Objectives Create Efficient and Just Organ Transplant Systems at National and International Levels

A Transformative Exhortation There is no force on earth that can equal in its conquering power the force of justice and wisdom *** Be anxiously concerned with the needs of the age ye live in, and center your deliberations on its exigencies and requirements. Bahá'u'lláh Bahá'u'lláh, Gleanings from the Writings of Bahá'u'lláh, CXII and CVI.

Towards Applying Bahá í Principles for Creating Efficient and Just Organ Transplant Systems I. Adheres to Principle of Oneness of Humanity II. Respects Sanctity of Human Life III. Safeguards Personal Freedoms and Public Welfare IV. Delivers Transparent and Participatory Processes

I. Principle of The Oneness of Humanity Evaluative Criteria & Candidate Domains of Application: Gender Race and Ethnicity Ideology and Belief Systems Geography Socioeconomic Status

Mandate for Implementation The principle of the Oneness of Mankind - the pivot round which all the teachings of Bahá u lláh revolve - is no mere outburst of ignorant emotionalism or an expression of vague and pious hope Its message is applicable not only to the individual, but concerns itself primarily with the nature of those essential relationships that must bind all the states and nations as members of one human family It calls for no less than the reconstruction of the whole civilized world. Shoghi Effendi Shoghi Effendi, World Order of Bahá u lláh, p.43.

On Non-sustainable National Control Legislations Budiani-Saberi & Delmonico, American Journal of Transplantation 2008; 8:925-929.

On Racial and Ethnic Disparities Based on Organ Procurement and Transplantation Network data as of December 9, 2011.

On Socioeconomic Disparities Sample Nations: 0-10,000 India, Indonesia 10-20,000 Brazil, Russia 20-30,000 Saudi Arabia, Israel 30-40,000 U.S., Germany WHO and CIA World Fact Book, 2010 estimates.

Oneness of Mankind In every Dispensation the light of Divine Guidance has been focused upon one central theme. In this wondrous Revelation, this glorious century, the foundation of the Faith of God and the distinguishing feature of His Law is the consciousness of the Oneness of Mankind. Abdu l-bahá Shoghi Effendi, World Order of Bahá u lláh, p.36.

II. The Sanctity of Human Life Evaluative Criteria & Candidate Domains of Application: Quality Care for Donors and Recipients Enhancement of Life: Medical and Psychosocial Human Commodification

The Unique Station of Mankind Man is the noblest of the creatures. In his physical organism he possesses the virtues of the mineral kingdom. Likewise, he embodies the augmentative virtue, or power of growth, which characterizes the kingdom of the vegetable. Furthermore, in his degree of physical existence he is qualified with functions and powers peculiar to the animal, beyond which lies the range of his distinctive human mental and spiritual endowment. Abdu l-bahá Abdu l-bahá, Promulgation of Universal Peace, Stanford University, October 1912.

On Enhanced Healthcare for Donors and Recipients Standardize medical system care of recipients and living donors Assure ethical standards for obtaining consent Conduct scientific studies of long-term outcomes (eg. Registries of at-risk living donors)

On Enhancement of Life Investment in scientific inquiry to improve recipient and donor medical and psychosocial outcomes Exchange of international data Standardization of data collection methodologies Standardization of data metrics

Resources for Transplant Stakeholders www.organdonor.gov/materialsresources/ TA L K I N G A B O U T T R A N S P L A N TAT I O N US Department of Health and Human Services, HRSA, UNOS. What Every Patient Needs to Know

Prohibition on Commodification of Humans It is not for him who is himself a servant to buy another of God s servants, and this hath been prohibited in His Holy Tablet. Thus, by His mercy, hath the commandment been recorded by the Pen of justice. Bahá'u'lláh Bahá'u'lláh, The Most Holy Book, paragraph 72.

Red Market: Organ Price Points HEARTS Price: Legal: $997,700 / Illegal: $119,000 Source: Legal: Deceased donors / Illegal: Chinese prisoners LIVERS Price: Legal: $557,000 / Illegal: $157,000 Source: Legal: Living donors, deceased donors / Illegal: Executed prisoners, Filipino slum-dwellers KIDNEYS Price: India: $15,000 / China: $62,000 / US: $262,900 Source: Legal: Living donors, deceased donors / Illegal: Paid donors, executed prisoners Scott Carney, The Red Market, 2011.

III. Personal Freedoms and Public Welfare Evaluative Criteria & Candidate Domains of Application: Personal Domain - Access and Choice Public Domain Access and Utility

Spectrum of Liberty The Ancient Beauty hath consented to be bound with chains that mankind may be released from its bondage, and hath accepted to be made a prisoner within this most mighty Stronghold that the whole world may attain unto true liberty. Bahá'u'lláh *** He revealed laws and principles to guide the free, He established an Order to channel the actions of the free, He proclaimed a Covenant to guarantee the unity of the free. The Universal House of Justice Individual rights and freedoms: Statement of Universal House of Justice, paragraphs 53, 54.

On Technological and Development Access Disparities Comparison of Kidney transplants from DD (pmp) depending on HDI level. Comparison of Liver transplants from DD (pmp) depending on HDI level. Sample Nations Low HDI Pakistan, Congo Medium HDI Jordan, China High HDI Brazil, Malaysia Very High HDI Norway, Israel WHO, United Nations Development Programme, 2010.

On Correlation of HDI and Kidney Transplant Rates WHO, United Nations Development Programme, 2010.

Harmonizing Personal and Community Interests The Baha'i conception of social life is essentially based on the principle of the subordination of the individual will to that of society. It neither suppresses the individual nor does it exalt him to the point of making him an anti-social creature, a menace to society. As in everything, it follows the golden mean. The Universal House of Justice Individual rights and freedoms: Statement of Universal House of Justice, paragraph 50.

On Utility: Considerations of Age J Heart Lung Transplant. 2011 Oct ; 30 (10): 1071-1132.

On Utility: Considerations of Procedure Choice J Heart Lung Transplant. 2011 Oct ; 30 (10): 1071-1132.

IV. Transparent and Participatory Processes Evaluative Criteria & Candidate Domains of Application: Transparent Policy Development Consultative Input and Decision-making Collective Implementation and Action

Exhortation on Interactive Consultation No welfare and no well-being can be attained except through consultation. Bahá'u'lláh *** At all times, avoid the spirit of exclusiveness, the atmosphere of secrecy, free themselves from a domineering attitude, and banish all forms of prejudice and passion from their deliberations. They should, within the limits of wise discretion, take the friends into their confidence, acquaint them with their plans, share with them their problems and anxieties, and seek their advice and counsel. Shoghi Effendi (1) Prosperity of Humankind, pp.7-8. (2) Shoghi Effendi, Bahá'í Administration, p.196.

Towards Integrating Public Input at National and International Levels

Questions and Answers Thank You