Year 5 Ethics and Law 2013

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

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

Facts and figures: beliefs vs actions

Facts and figures: beliefs vs actions

Facts and figures: beliefs vs actions

These developments are all very recent. It is a challenge to ensure our ethics and laws keep up with scientific advances

UK Law (old laws) • The Human Tissue Act 1961• The Anatomy Act 1984• The Human Organ Transplants Act 1989

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”

UK Law: The Human Tissue Act 2004

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”

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

Can anyone think of any possible exceptions to consent?

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

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?

Organs are scarce

How can we distribute

organs fairly?

How can we increase the

pool of organs ethically?

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

UK Law

• Equal access: free of bias based on race, sex, income level

• Free from medical or social ‘worthiness’• Maximum benefit• Medical need

How can we increase the pool of donors ethically?

http://www.guardian.co.uk/media/video/2009/oct/30/organ-donation-tv-ad

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*

Germany: Opt-in 12% consent rate

Austria: Opt-out99% consent rate

What are the arguments for and against opt-out?

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

Organ trade Illegal organ trade: India, China, Africa, Egypt, USA and others Legal organ trade: Iran (since 1998)

Goyal M, Mehta RL, Schneiderman LJ, et.al. Economic and health consequences of selling a kidney in India. JAMA, 2002; 288(13):1589-1593.

Organ trade/trafficking is ILLEGAL in the UK

Social incentive programmes

Altruistic living unrelated donor

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*

What might people ask you as a doctor?

Questions from donors

“I’m not sure if my religion allows

donation”

Questions from donors

“I’m not sure if my religion allows

donation”

No major UK religions are opposed to organ

donation

Questions from donors

“What will happen if I’m on the register but

my relatives object”

Questions from donors

“They will be encouraged to accept

your wishes. ”

“What will happen if I’m on the register but

my relatives object”

Questions from donors“Can I be sure that doctors

will fight as hard to save me if I’m on the register?”

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?”

Questions from relatives

“Will my relatives’ body be disfigured?

Can I see them after?”

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?”

Questions from relatives

“How do you know he’s really dead? He’s

still breathing.”

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.”

Questions from relatives“Can we decide who gets my

relatives organs? I don’t want a criminal to have

them.”

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.”

Questions from recipients

“Can I contact the family of the donor to

thank them?”

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?”

Questions from recipients

“Can I pay someone to donate an organ to

me?”

Questions from recipients

“No. It is absolutely illegal to trade organs in the UK.”

“Can I pay someone to donate an organ to

me?”

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

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

For more on the ethics and law of organ donation: http://www.scoop.it/t/ethics-and-law-of-organ-donation

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