Transcript The future of global health - Global Bioethics Initiative Summer School

Office of Research Integrity & Assurance (ORIA)
The future of global health:
Navigating a complex ethical terrain
Mary Simmerling, PhD
Assistant Professor of Research Integrity in Medicine
Office of Research Integrity
Global Health at Weill Cornell Medical College
 Service, training, and research to address health
problems that transcend national boundaries,
disproportionately affect the resource poor, and are
best addressed by multidisciplinary solutions.
 Goal is to create a sustainable and innovative
research and training program that engage students
and faculty at all levels and from multiple disciplines
to solve problems of global health.
Major Global Health Initiatives at WCMC
Australia: University of Sydney Medical School
Brazil: UFBa and FIOCRUZ
India: Christian Medical College
India: Narayana Hrudayalaya and Mazumdar-Shaw
Cancer Center
Peru: San Marcos Medical College
Qatar: Weill Cornell in Qatar
Tanzania: Weill Bugando
Haiti: GHESKIO Centers
GHESKIO (Groupe Haitien d’Etude du Sarcome de
Kaposi et des Infection Opportunistes) Centers
* 'Managing Conflicts of Interest in Clinical Care: The 'Race to the Middle' at US Medical Schools' appeared in the
October 2013 edition of Academic Medicine, Vol. 88, No. 10 – data based on September 2011 Policies
* 'Managing Conflicts of Interest in Clinical Care: The 'Race to the Middle' at US Medical Schools' appeared in the
October 2013 edition of Academic Medicine, Vol. 88, No. 10 – data based on September 2011 Policies
* 'Managing Conflicts of Interest in Clinical Care: The 'Race to the Middle' at US Medical Schools' appeared in the
October 2013 edition of Academic Medicine, Vol. 88, No. 10 – data based on September 2011 Policies
1982
2014
How do we respond when things don’t go that
well?
What happens at the intersection of longstanding
cultural norms and moral
disagreements/disharmonies?
What happens when we are faced with conflicting
demands (internal or external)?
Philosophical considerations
Principles based framework for establishing:
 What is morally permissible/justifiable
 What is morally required (eg, as a duty or
obligation)
 What is morally unjustifiable
Guiding/foundational moral principles
Beneficence
Do good, don’t harm
Respect for persons
Treat people as autonomous agents (with limitations)
Allow them to make their own decisions
Put them in a good position to make those decisions in a
well-informed way (power differential, knowledge differential)
Justice
Fairness (not necessarily equality, but consistency)
With hard questions…..
 Do we need to respect everyone and
everything?
 What does it mean to do good? Towards what
end?
 How do we resolve competing moral – and
practical - demands?
Beneficence
 What maximizes benefits?
 Whose benefits?
 Who gets to decide?
Respect for Persons
 Who gets to choose (be a chooser)?
 Under what circumstances?
Justice
 Fairly sharing benefits and burdens – should
geographic lines matter? Are they morally
relevant?
 Defining the standard of care: is it where one
stands at the time, or is it defined by the best
(available) options? Does this mean the poor
should get less, because they have less? (and if
so, how could THAT be fair?)
Case for consideration/discussion
Organ transplantation in China
 January 2007 – Vice Minister of Health publicly admits
that China uses organs from executed prisoners for
transplantation
How should we respond?
Supply & Demand – US & PRC
US:
– SUPPLY:
• ~30,000 transplants in
2005
• 12,958 donors in 2011
(7,502 deceased)
– DEMAND:
• > 112,905 currently wait
listed for transplant
PRC:
– SUPPLY:
• ~10,000
transplants/year
– DEMAND:
• ~1.5 million in need
of transplant
HBV and HCV Prevalence
Worldwide Incidence of HCC
•
China
– 120,000 deaths per year
– Highest incidence in the
world
– Second leading cancer
related cause of death
Sources of Organs
US
PRC
– Living donors (~50%)
• Biologically & emotionally
related
• Stranger/”Good Samaritan”
– Living donors (~5%)
• Currently all living donors
are genetically related to
recipient – e.g., parents,
children, siblings
– Deceased donors (~50%)
• Donation after cardiac death
• Donation after brain death
(1968)
– Deceased donors (~95%)
• Donation after cardiac
death
– Small percentage
(~2-3%) from traffic
accident victims
– Majority of deceased
donor organs from
executed prisoners
(Huang, 2007)
Use of Organs from Prisoners
US
• Prisoners are allowed to
donate organs (while alive and
at death), though deceased
prisoner organs are rarely
used – no use of organs from
executed prisoners
• South Carolina passed
legislation allowing the
creation of a network for organ
& tissue donation in prisons
• In 2007 legislation was under
consideration in South
Carolina that would have given
prisoners the option to donate
organs in exchange for 180
days off their sentence
PRC
• Prisoners (and their families)
are asked to give consent to
allow their organs to be used
for transplantation after
execution
Executions in the US 19302006
U.S. Dept of Justice Office of Justice Programs Bureau of Justice Statistics
Number of
Executions/Population
US - 2006
• Population in US
~298,444,215
• US DOJ states that
53 prisoners were
executed in 2006
PRC - 2006
• Population in PRC
~1,313,973,713 (~4x
that of US)
• Amnesty International
has estimated that
~1,700 prisoners were
executed in PRC in
2006 (per capita ~32x
that of US)
Use of Organs from Prisoners
• Separability between medical organ transplantation and the
criminal justice system
• Although the practice of organ transplantation is
standardized globally, the systems and mechanisms for
criminalization and punishment of citizens varies widely
• Use of organs from executed prisoners in PRC has
been widely criticized by international transplant
community
• US’s decision not to use organs from executed
prisoners has been criticized as unethical by some
who argue it is wasteful
Access to Transplantation
US
– National recipient waiting
list
– National allocation system deceased donor organs
“public” goods
– No national heath
insurance
– Average cost of liver
transplant in 2011
$557,100 US
PRC
– No national recipient
waiting list
– No national allocation
system
– No national health
insurance
– Average cost of liver
transplant ~$30,000 US
Ethical Challenges
• Historical Challenges
• Feasibility
• Risks & Benefits
• Scarcity, Supply &
Demand
• Access & Allocation
• Informed Consent
• Use of prisoner organs
• Organ sales
• Continuing/Emerging
Challenges
• Risks & Benefits
• Scarcity, Supply &
Demand
• Access & Allocation
• Informed Consent
• Use of prisoner organs
• Organ sales
• Transplant tourism
Continuing & Emerging Ethical
Challenges
•
•
US
•
•
•
•
•
•
•
Promote deceased donation
Ensure validity of informed
consent for donors & recipients
(living & deceased donors)
Ensure protection of vulnerable
individuals
Prevent organ trafficking &
transplant tourism
Standardization of evaluation &
consent criteria for living donors
Move towards greater equality of
access to transplantation –
address issue of poverty as a de
facto contraindication for tx
Address issue of
compensation/organ sales
PRC
•
•
•
•
Promote deceased donation
Ensure validity of informed
consent for donors & recipients
(living & deceased donors)
Ensure protection of vulnerable
individuals
Prevent organ trafficking &
transplant tourism
Legislation of Transplantation
US
• 1968 - Uniform Anatomical gift
Act (UAGA)
– Establishes comprehensive &
uniform laws regarding organ
and tissue donations
• 1984 – National Organ
Transplant Act (NOTA)
– Prohibits commercial dealings
in organs for transplantation
PRC
• 1995 – Ministry of Health
enacts “The Human Organ
Transplant Ordinance”
– Prohibits commercial dealings
in organs for transplantation
– Regulates living donor
transplantation
• November 2006 – Guangzhou
meeting – established
“entrance criteria” for programs
– reducing the number from
600 to 125/150
• 2007 – Regulation of Human
Organ Transplantation
Challenges
• Abolishing & criminalizing transplant tourism
• China has already taken a clear and strong position against
this human rights abuse, however there is still a need to
enforce it
• Utilizing living organ donors without contributing to the
organ trafficking problem
• Establishing an ethical framework for transplantation that
reflects China’s history, culture, and beliefs
Opportunities
• Use of brain dead donors in PRC
• Establishment of a national system for
access
and allocation of organs
• Further improvement of procedures for
informed consent for living & deceased
donation
Support, and sanctions
• The global transplant community has supported
China’s efforts to establish an ethical framework
for transplantation that reflects China’s history
culture, beliefs, and values - simply imposing a
distinctively Western ethic on China would be
disrespectful & may be damaging to China’s
efforts.
• At the same time, initiated sanctions by barring
publication of articles utilizing organs from
executed prisoners
Moral engagement
 Be humble, curious, and creative
 Approach issues with humility, gravitas, and honesty
 Recognize these are complex and serious issues that
can’t be solved alone, and often are not completely
solvable
 Don’t be a moral bystander – take the opportunity to
tune your moral compass