organ donation ethics and law y5 ucl medical school 2013
DESCRIPTION
Lecture delivered in first week of Year 5 UCL Medical School. Lots of discussion and debate, particularly about the arguments for and against an opt-out system. Engaged students make teaching really fun.TRANSCRIPT
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Year 5 Ethics and Law 2013
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Objectives
By the end of this lecture you will be able to:• define the main features of the Human Tissue Act 2004• give two examples of when consent is required for organ/tissue use• give one example of when consent is not required for organ/tissue use• list the different factors that could be taken into account to decide how
organs are distributed, and specify which are used in the UK• list strategies for increasing organ donation and specify which are in
use in the UK• give one argument for and one argument against an opt-out system of
donation
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Agree or disagree 1. Someone who has received 1 organ transplant should not be able
to have another2. Someone whose lifestyle (smoking, drinking, alcohol, obesity) has
caused their organ failure should not get a transplant3. If someone is on the donor register their organs should be taken
for transplantation even if their family object 4. A person who has young children should be given a transplant
before a single person5. Someone in financial difficulty should be able to sell an organ
such as a kidney6. Prisoners with life sentences should not be given organ
transplants
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Facts and figures: beliefs vs actions
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Facts and figures: beliefs vs actions
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Facts and figures: beliefs vs actions
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These developments are all very recent. It is a challenge to ensure our ethics and laws keep up with scientific advances
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UK Law (old laws) • The Human Tissue Act 1961• The Anatomy Act 1984• The Human Organ Transplants Act 1989
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1. Learning from Bristol: The Report into Children's Heart Surgery at Bristol Royal Infirmary (July 2001)2. The Royal Liverpool Children's Hospital Inquiry Report (January 2001) HC12-II 3. Dept of Health (May 2003) The Investigation of Events that followed the death of Cyril Mark Isaacs; Dept of Health (July 2003) Isaacs Report Response
“Storage and use of organs after people died without proper consent was commonplace”
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UK Law: The Human Tissue Act 2004
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Key points: Human Tissue Act 2004• Regulates the removal, storage and use of
human tissue• Created the Human Tissue Authority• Makes it lawful to take minimum steps to
preserve the organs of a deceased person for use in transplantation while steps are being taken to determine the wishes of the deceased
• Creates a new offence of “DNA theft”
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Consent is the fundamental principle underpinning the lawful retention of body parts, organs and tissues, from the living or deceased, for specified health purposes or
public display
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Can anyone think of any possible exceptions to consent?
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Exceptions to consent
• Some research on anonymised cell samples – strict rules and regulations
• Unable to trace the donor but wish to use sample to obtain medical/genetic information – must apply to the Human Tissue Authority
• Adults lacking capacity – best interests decision• Extreme public health emergency – Secretary
of State has power
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Living adult• His/her consent
Deceased adult • His/her consent before
death • If no prior consent, consent
of a nominated representative
• If no representative, consent of a qualifying relative
1. Spouse/partner2. Parent/child3. Brother/sister/other relatives4. Friend of longstanding
Who can consent?
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Organs are scarce
How can we distribute
organs fairly?
How can we increase the
pool of organs ethically?
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How can we distribute organs fairly?
• To each person an equal share• To each person according to need• To each person according to effort• To each person according to contribution • To each person according to free market
exchange
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UK Law
• Equal access: free of bias based on race, sex, income level
• Free from medical or social ‘worthiness’• Maximum benefit• Medical need
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How can we increase the pool of donors ethically?
http://www.guardian.co.uk/media/video/2009/oct/30/organ-donation-tv-ad
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How can we increase the pool of donors ethically?
• Education/nudge*• Mandated choice• Alternative sources • Using ‘high-risk’ donors• Opt-out system (presumed consent)• Financial incentives• Social incentives• Increasing living donors*
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Germany: Opt-in 12% consent rate
Austria: Opt-out99% consent rate
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What are the arguments for and against opt-out?
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What are the arguments for and against opt-out?
For• It would increase the pool of
donors• Strong utilitarian arguments
to save lives• Takes pressure off families• Increases autonomy of donor• Same choice, just changes
default position• Actually fulfills many
people’s wishes
Against• Reduces autonomy if don’t
actively opt-out• Vulnerable people would not
opt-out• Changes nature of ‘gift’ of
organ donation • May induce backlash and
reduce donations• Mixed evidence about
whether it would increase pool
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Organ trade Illegal organ trade: India, China, Africa, Egypt, USA and others Legal organ trade: Iran (since 1998)
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Goyal M, Mehta RL, Schneiderman LJ, et.al. Economic and health consequences of selling a kidney in India. JAMA, 2002; 288(13):1589-1593.
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Organ trade/trafficking is ILLEGAL in the UK
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Social incentive programmes
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Altruistic living unrelated donor
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How can we increase the pool of donors ethically?
• Education/nudge*• Mandated choice• Alternative sources • Using ‘high-risk’ donors• Opt-out system (presumed consent)• Financial incentives• Social incentives• Increasing living donors*
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What might people ask you as a doctor?
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Questions from donors
“I’m not sure if my religion allows
donation”
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Questions from donors
“I’m not sure if my religion allows
donation”
No major UK religions are opposed to organ
donation
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Questions from donors
“What will happen if I’m on the register but
my relatives object”
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Questions from donors
“They will be encouraged to accept
your wishes. ”
“What will happen if I’m on the register but
my relatives object”
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Questions from donors“Can I be sure that doctors
will fight as hard to save me if I’m on the register?”
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Questions from donors
“Yes, we have a duty of care to save life first. If, despite our best efforts, a patient
dies organ and tissue donation can be considered. A completely different team
of donation and transplant specialists would then be called in.”
“Can I be sure that doctors will fight as hard to save
me if I’m on the register?”
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Questions from relatives
“Will my relatives’ body be disfigured?
Can I see them after?”
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Questions from relatives
“Organs and tissue are always removed with the greatest care and respect. This takes place in a normal operating theatre by specialist surgeons. Afterwards
the surgical incision is closed and a dressing applied in the normal way. You can of course spend time with
your relative after the organ removal. ”
“Will my relatives’ body be disfigured?
Can I see them after?”
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Questions from relatives
“How do you know he’s really dead? He’s
still breathing.”
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Questions from relatives
“Death is confirmed in exactly the same way for people who donate organs and those that
do not. For those on ventilators brain stem tests are done. There are strict protocols for these tests and they are performed by two
very experienced doctors.”
“How do you know he’s really dead? He’s
still breathing.”
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Questions from relatives“Can we decide who gets my
relatives organs? I don’t want a criminal to have
them.”
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Questions from relatives
“No. All organs donated in the UK by people who have died are donated
freely, voluntarily and unconditionally. They are allocated on the basis of need
and best match.”
“Can we decide who gets my relatives organs? I don’t want a criminal to have
them.”
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Questions from recipients
“Can I contact the family of the donor to
thank them?”
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Questions from recipients
“No. This is not permitted in the UK, but thanks can be passed on
by a SNOD.”
“Can I contact the family of the donor to
thank them?”
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Questions from recipients
“Can I pay someone to donate an organ to
me?”
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Questions from recipients
“No. It is absolutely illegal to trade organs in the UK.”
“Can I pay someone to donate an organ to
me?”
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Agree or disagree 1. Someone who has received 1 organ transplant should not be able
to have another2. Someone whose lifestyle (smoking, drinking, alcohol, obesity) has
caused their organ failure should not get a transplant3. If someone is on the donor register their organs should be taken
for transplantation even if their family object 4. A person who has young children should be given a transplant
before a single person5. Someone in financial difficulty should be able to sell an organ
such as a kidney6. Prisoners with life sentences should not be given organ
transplants
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Objectives
By the end of this lecture you will be able to:• define the main features of the Human Tissue Act 2004• give two examples of when consent is required for organ/tissue use• give one example of when consent is not required for organ/tissue use• list the different factors that could be taken into account to decide how
organs are distributed, and specify which are used in the UK• list strategies for increasing organ donation and specify which are in
use in the UK• give one argument for and one argument against an opt-out system of
donation
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For more on the ethics and law of organ donation: http://www.scoop.it/t/ethics-and-law-of-organ-donation
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References
• Learning from Bristol: The Report into Children's Heart Surgery at Bristol Royal Infirmary (July 2001)
• The Royal Liverpool Children's Hospital Inquiry Report (January 2001) HC12-II
• Dept of Health (May 2003) The Investigation of Events that followed the death of Cyril Mark Isaacs; Dept of Health (July 2003) Isaacs Report Response
• Goyal M, Mehta RL, Schneiderman LJ, et.al. Economic and health consequences of selling a kidney in India. JAMA, 2002; 288(13):1589-1593