ORGAN DONATION & TRANSPLANTATION- Legal & Social Issues

1. ORGAN DONATION & TRANSPLANTATION- Legal & Social Issues Dr.Sunil Shroff Managing Trustee, MOHAN Foundation, Chennai Head of Department - Urology & Renal Transplantation, Sri Ramachandra Medical College & Research Institution, Chennai, India info@mohanfoundation.org

2. Death is not extinguishing the light but putting out the lamp because the dawn has come - Rabindranath Tagore

3. Organ Donation – Concepts

4. Types of Organ Donors • After Natural Death • Living person – related to patient • Living person – unrelated to patient • After Brain Death

5. Organ Donation by a Living person • Blood • Eyes • Bone marrow • Kidneys • Portion of Liver • Portion of Lung • Portion of Pancreas Iddham Shariram Paropkardum (This body is for the use of others)- Shankracharya

6. Eyes Skin and fascia Heart Valves Bones and Tendons Cartilage Veins and Arteries Middle Ear Bones Organ Donation after Natural Death The only thing you take with you when you're gone is what you leave behind - John Allston

7. Eyes ( 2 ) Kidneys ( 2 ) Liver ( 1 ) Lung ( 2 ) Pancreas ( 1 ) Small Intestine ( 1 ) Voice Box or Larynx( 1 ) Hand ( 2 ) Penis ( 1 ) Middle Ear Bones ( 2 ) Skin and fascia - Numerous Bone - Numerous Cartilage - Numerous Tendons - Numerous Veins - Numerous Arteries - Numerous Nerves - Numerous Fingers and Toes ( 20 ) Organ Donation After Brain Death

8. COMMMONEST TYPE OF ORGAN DONATION IN INDIA • Blood - Living related or unrelated • Eyes - After Natural Death • Kidney Donation - Mostly unrelated and sometimes related And he will wipe out every tear from their eyes and death will be no more. - Revelations 21:4 

9. Eye Donation 1998-99 1997-98 1996-97 Corneas Retrieved in India 1996- 99 3 million corneally blind people in India. 60% are children below the age of 12. Target retrieval of corneas by Eye bank of India is 150,000 corneas per year.

10. ORGAN DONATION & TRANSPLANTATION ETHICAL * MORAL ISSUES Philoshers MEDICAL ISSUES - Physicians SURGICAL ISSUES - Surgeons SOCIAL ISSUES – Social Scientists IMMUNOLOGICAL ISSUES – Immunologist RELIGIOUS ISSUES – Religious Heads of a Society ORGAN REGENERATION - Basic Scinetists IMMMUNOSUPPRESSIVE DRUGS – Pharmacist & Pharmaceuticals

11. ORGAN DONATION & RELIGION Death is just a beginning of another life- Upanishads

12. Religion & Organ Donation Hinduism Religious law does not prohibit Hindus from donating their organs, This act is an individual decision. Jainism Jain religious leaders consider eye donation as a sublime form of charity and stress  a powerful link between ‘daan’ (charity) and ‘moksha’ (salvation).  Highest eye donation rate in India among Jains of Gujarat. For that which is born death is certain and for the dead, birth certain.. Therefore grieve not over that which is inevitable. - Bhagavad Gita

13. Religion & Organ Donation Catholicism Catholics view organ donation as an act of charity, and self-sacrifice. Transplants are ethically and morally acceptable to the Vatican. Pope John Paul II Protestantism Protestants encourage and endorse organ donation. "We accept and believe that our Lord Jesus Christ came to give life and came to give it in abundance. Organ donations enables more abundant life, alleviates pain and suffering, and is an expression of love in the times of tragedy.” - Rev. James W. Rassbach

14. Religion & Organ Donation Islam In 1983 the Muslim Religious Council initially rejected organ donation by followers of Islam, but it has reversed its position, provided donors consent in writing prior to their death. The organs of Muslim donors must be transplanted immediately and should not be stored in organ banks. Jehovah’s Witnesses Jehovah’s Witnesses do not encourage organ donation but Believe it is a matter best left to the individual’s conscience God created man to be immortal and made him to be an image of his own eternity - Bible, The Wisdom of Solomon

15. Religion & Organ Donation Buddhism No written doctrine but founder of a Buddhist Temple of Chicago said: "We honor those people who donate their bodies and organs to the advancement of medical science and to saving lives.” Judaism Judaism teaches that saving a human life takes precedence over maintaining the sanctity of the human body. "If one is in the position to donate an organ to save another’s life it’s obligatory to do so, even if the donor never knows who the beneficiary will be,” - Rabbi Moses Tendler

16. Organ Donation Ethical Issues

17. Is Living Organ donation Ethical? • Hippocratic oath – Do no Harm • Voluntarism – Decision to donate in a family may not be voluntary • Usually more woman donate than men - mother or wife are the commonest donors One in 1000 living donor is likely to die even in best of surgical hands!!

18. Commercial Aspects of Organ Donation • Most of the social and Ethical problems in organ donation due to kidney donation • A person has a pair of kidneys and can donate one and still be healthy • Usually trafficking of organs from the poor to the rich On e-bay the famous Internet Auction websites a Kidney was being auctioned for almost One million dollars!!!

19. Commercial Aspects of Organ Donation • Despite Govt. authorization committee to regulate organ donation activity many instances of paid donors are reported!! • Regular kidney scandals have become part of accepted newspaper readings in India!! Kidney in Indian society is looked upon as a commodity hence the task of popularizing the concept of organ donation can be difficult!!

20. Questionable Ethics • Human Rights Violation- in China (1990) – 1670 kidneys transplanted mostly from executed criminals • Commercial Trading of Organs – in India (1990) – 1580 kidneys transplanted mostly from unrelated donors • Bizarre instances of kidneys being removed by surgeons from an innocent donor is reported from all over the world regularly Internet may be facilitating the whole process of organ trafficking

21. Ethical isues & Cost Factors Detractors – Transplant Surgery and patient maintenance -expensive not suitable for India. • Transplant surgery adds a few extra years to life but takes away most of the family savings of Middle income group family • Only rich can benefit with a transplant. • No hope for Poor in this field Kidney Tx – Rs.2 Lakhs for surgery & Rs.1 lakh / year afterwards Heart Transplant – Rs. 5 Lakhs for Surgery & Rs.75,000 / year afterwards Liver Tx. – Rs.10 to 15 lakhs for surgery and Rs.50,000 to 75,000/ year afterwards

22. Ethical issues - Is Transplant Surgery Necessary at all in India? Detractors – • Transplants benefits a few in India and the same time and resources can be used by the doctors to instead save many other lives

23. Ethical issues - Is Transplant Surgery Necessary at all in India? Evangelist – • There are 150,000 Patients with Kidney failure needing transplants • The only hope for living for an Acute liver failure patient is to undergo a transplant • Heart transplant gives an almost immediate improved quality of life to the patient • The long term success of the surgery are better than some of the cancers • Transplant practice - “Cutting edge of medicine practice”- keeps us abreast with the latest in the field of research.

24. Organ donation Legal Aspects in India

25. Transplantation of Human Organs Act, 1994 • Aims • Regulate removal, storage and transplantation of human organs for therapeutic purposes • To prevent commercial dealings in organs Tamil Nadu Assembly passed the Act in May 1995

26. Main Provisions of THO Act • Concept of “Brain Stem death” accepted • Only “Living related Donors” are allowed to donate organs without legal problems • For unrelated Donors - Permission from “Authority” required prior to surgery • Requires - “Regulation and Registration of hospitals” undertaking transplantation • “Punishment for any commercial dealings in organs” 1st Relative – Father / Mother / Brother / Sister / Spouse / Son/ Daughter

27. Brain Stem Death • Definition - Stage at which all functions of the Brain Stem have permanently and irreversibly ceased • Certification • Panel of four doctors • Two sets of tests to be carried out - minimum of six hours in between the tests • Form No. 8 to be used for certification Death is usually a gradual event. Nail and hair can continue to Grow even after death !!

28. Organ Donor • Person may authorize removal of any human organ before his death. • Person may express his wish to donate his organs in the event of his death, through a ( Form No. 5 ) • “Informed Consent” of Family is crucial to cadaver organ donation. “Presumed Consent” – In some countries the law demands organ donation from its citizens, unless they express otherwise in writing

29. Offences and Penalties Commercial dealings in organs • Imprisonment : 2 to 7 years • Fines : Rs.10,000/- to Rs.20,000/- • Penalties for Doctors • First Offence : Name struck off State Medical Register for 2 years • Subsequent Offence : Name struck off permanently Since the Act was passed there has been two criminal prosecution against doctors

30. Pitfalls - THO ACT • Donors • Scrapping of Sub Clause (3) , Clause 9 of Chapter II • If any donor authorizes the removal of any of his human organs before his death under sub-section (1) of section 3 for transplantation into the body of such recipient, not being a near relative as is specified by the donor, by reason of affection or attachment towards the recipient or for any other special reasons, such human organ shall not be removed and transplanted without the prior approval of the Authorization Committee. Majority of kidney transplants in the country use this clause resulting in “ legal commercialisation of kidneys”

31. Is There a solution to these Legal & Ethical Problems • Restrict the number of Live unrelated kidney transplants • Push the “Brain death organ donation” Programme forward • Make amendments in the THO Act • Make punishments for offences more stringent and effective

32. Brain Death Concepts • First recognised in 1959 in Paris in Intensive care units (coma de passe ) • Formally accepted as a form of death in 1968 by the ad hoc committee at Harvard • Accepted by Govt. of India in 1994 as a form of death In Babies under one year brain death concept not applicable

33. Brain dead Pool of Donors • No wastage of organs if organ donation from brain dead donors undertaken • Almost 95% of organ donors in western world originate from Brain Dead Donors • Largest pool of organ Donors in the world

34. Common Causes of Brain Death In India Road traffic Accidents the commonest cause of brain death

35. Brain dead Pool of Donors in India In any of the metropolitan city in India There are at least on an average between 10 to 20 patients admitted in different ICUs who are brain Dead Even Doctors often fail to diagnose or recognise this condition!!

36. Transplant Statistics • Number of transplants done throughout the world - 5,50000 • Number of patients on transplant waiting list - 1,50000 • Number of Transplants worldwide 1997 - 37,072 Annual transplant figures are not rising. Though Waiting lists though are perpetually going up.

37. Transplant Activity of Western World (1985 to 1992) 1989

38. TOTAL TRANSPLANT ACTIVITY IN INDIA (1998 – 1999) Golden IT triangle of India Hyderabad, Chennai, Bangalore are also famous as “Kidney Bazaars” in the western world

39. DON’T TAKE YOUR ORGANS TO HEAVEN FOR HEAVEN KNOWS THEY ARE NEEDED HERE !!

40. Organ Donation - Social Issues

41. Unusual Social Situations & Dilemmnas In certain brain death situations despite the consent of the family organ donation was not possible - • Two wives where first legal wife raised an objection to organ donation • Asking for money by family for organs • Death by hanging in recently married girl • Brain death in a destitute where no relatives were available for consent

42. Problems with Cadaver Organ Donation Programme in India Govt. Problem No Funding for programme Hospital problem No efforts to identify & maintain “Brain Dead” donors Community Problem No Awareness of “Brain-Death” Concept Spain has the highest number of brain death patients going on to organ donation – 32 per million population

43. Streamlining of THO ACT • Make it compulsory for doctors or medical social workers to ask for Organ Donation in a Brain Dead Situation • Identify doctors or senior nurses to work as Transplant Coordinators in each ICU • In Medico-legal cases it should be possible to perform Post-Mortem at same time as organ retrieval in presence of a Forensic Expert No financial costs involved in the above recommendations

44. Organ Donation Awareness Programmes • Mandated Choice on Driving License about organ donation • Education at School and College Level • Free Air time on Doordarshan and Private Channels for films on Organ Donation • Tax Exemption for documentaries on Organ Donation • Indirect incentives to donor families • Honoring cadaver donor families In states of Maharastra & Gujarat slogans about “Eye donation” displayed on National Highways

45. MOHAN Foundation - Objectives( Multi Organ Harvesting Aid Network ) • Formed in 1997 • Spread Message of Organ Donation • Works as a support group for Patients, Public & Physicians • Foundation subgroups – • Organ Sharing Group – INOS • Counselling unit – Manashanthi • Patient Support Group • Publishes “Indian Transplant Newsletter”

46. Organ Donor Cards by MOHAN Foundation Carry the card in the wallet Serves also as an emergency card The Foundation has distributed almost 100,000 cards in India. Cards are available in English, Tamil. Hindi and Marathi

47. Organ Donor Cards by MOHAN Foundation Give Life a SECOND Chance… Carry a Donor Card

48. MEMORIAL SERVICE 31ST OCT 1999 Loyola College, Chennai HONOUR OF CADAVER ORGAN DONORS ORGANISED BY MOHAN FOUNDATION Saplings Planted in Memory of cadaver Organ Donors by their family members in the Campus of Loyola College on 30th Oct 1999 - organised by MOHAN Foundation Painting Completion on Organ Donation theme organized for schools by MOHAN Foundation in March 2002 Movie in English, Hindi and Tamil for Television Channels Made by MOHAN Foundation

49. INOS - Initiative for organ sharing Group • Formed in Nov’1999 by MOHAN Foundation • Essence of INOS – “Not to Waste Any Organ” • Hospital in group includes – Apollo, CMC Vellore, Sri Ramachandra Hospital and Sundaram Medical Foundation • About 30 different organs shared between hospitals UNOS in USA is the largest organization such organization and is partly funded by the government

50. Counselling Unit- Manashanthi • Formed in April 2001 • As a support group for emotional failure • Located at Annanagar • Counselling available between 10AM and 1PM • Organises counselling lectures and workshops