1. health and fitness

Social Justice and Human Rights
Anthon Heyns
Bioethics Forum
15 June 2007
Introduction: Access to Health Care
• Distribution of justice in health care:
– How do we allocate our finite health care
resources in ways that are socially just?
• Social justice means being entitled to the
same rights and services as all other citizens.
Introduction: Access to Health Care
• Two approaches have been proposed:
– Libertarians: social justice model
– Free market supply and demand model
• These two inevitably create tensions
Introduction: Legal framework
• Constitution
– Access to health care
– Also addresses the issue of freedom of choice
• National policies
• National Health Act (61 of 2003); Chapter 8
– Health Professions Act 1974
• Regulations
• Standards
• Accreditation
Aim of the presentation
• Social justice vs. free market system
• Constitutional issues, especially those related
to the Bill of Rights
• Touch on the legislative framework and stem
cells
• Way forward
– Is there an approach that would be in harmony
with South African situation?
Allocation of finite resources
• Central question in democratic societies:
– How do we allocate our finite health care
resources in ways that are socially just?
Allocation of finite resources
• Social justice model
• Michael Walzer, Richard Titmuss, Daniel Beachamp
• Minimal levels of basic health needs must be
provided as a fundamental human right
– Gift relationship (Titmuss 1970; 1997)
• Mutuality amongst citizens
• Reciprocation
• Gratitude to the social body as a whole (not to individual)
– Has been eroded by globalisation, but remains central
to most national human tissues
Allocation of finite resources
• Supply and demand (free economic market)
• Milton Friedman (1910 – 2006)
– Personal autonomy principle is clearly primary
• Health care is no different than any other goods and/or
services provided by the market economy
– Minimal or no intervention by government
– Inexorable logic of supply and demand will
determine the optimal outcome
Social justice vs. free market
• Social justice model generally has worked well
in the blood donation setting
• Has not been appropriate for plasma
collection: paid plasma donors
• Demand for organs outstrip supply and gift
relationship has not proved persuasive
– Proposal: establish a regulated market associated
with social values
• Sufficiency vs. exploitation and dehumanisation
Social justice vs. free market (2)
• Regenerative medicine may be seen a
compromise between social generosity and free
economic market systems
– Neither a donation nor exploitation
• Uses the individual’s body as its own resource
potentiated by ex vivo interventions
– This is perceived as socially neutral
– Investment in biotechnology
• Note that the use of public bank cord cells is
allogeneic and private bank cells autologous
Criticism of private cord bank
• Criticism has been widespread amongst
clinicians, public health practitioners and
bioethicists
– Sequesters cord blood in a personal account
– Diverts clinically valuable cord blood from public
banks into private accounts, where likelihood of
use is slim
– Detracts from the gift relationship and thus
undermines the notion that tissue donation
should be according to the social justice model
Response to Criticism
• Argued that private cord banking is in domain of
private property, participates in open-ended
commercial biotechnology
• Good investment for the child
• The relationship between bank and account
holder is to lease facilities and to manage
technical aspects of harvesting and storage
• Thus severs questions of property from the issues
of commodisation – no exchange on the market;
in contrast value is ownership
Response to criticism (2)
• Social justice
– Argument that private banks divert resources
away from public banks and thus compromise the
health of the majority is flawed
• Different populations are targeted
• There is room for private-public synergism. In South
African context this may be the only rational platform
to establish a public cell bank
• This may be a way to address the disparate ethnic
donor/recipient availability of stem cells
Response to criticism (3)
• Synergy and mutual support
– Private sector has offered to contribute some of
their resources to establish and maintain a public
cord blood bank
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•
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Intellectual property and expertise
Staff
Equipment
Cryostorage facilities
Financial support
Bill of Rights issues (S. 27)
1. Everyone has the right to have access to
a. health care services, including reproductive
health care;
2. The state must take reasonable legislative
and other measures, within its available
resources, to achieve the progressive
realisation of each of these rights.
Bill of Rights issues (S 12)
1. Freedom and security
2. Everyone has the right to bodily and
psychological integrity, which includes the
right
– to make decisions concerning reproduction;
– to security in and control over their body; and
– not to be subjected to medical or scientific
experiments without their informed consent.
Bill of Rights issues (SAHRC 2004)
• Right to health is not a right to be healthy
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Notion of highest attainable standard of health
takes into account both the individual’s biologic and
socio-economic preconditions and the State’s
available resources
S 7(2) of the Constitution: State to respect,
promote and fulfil the rights in the Bill of Rights
–
State should abstain from carrying out, sponsoring or
tolerating and practice, policy or legal measure which
violates the integrity of the individual or which in any way
interferes or limits his/her right to pursue the enjoyment
of the rights of the Bill of Rights
Response to criticism
• Bill of Rights 27. Health care, food, water and
social security
– Infringement of the right to control one’s own
body: mother and baby’s cord blood
– Parents right to decide on future health of child
• This is an issue of freedom of choice of patients with
the necessary resources
– Also: the right to freedom of economic activity:
the right of private cell banks to operate
National Health Act
• Tissue …. May be donated by any person
contemplated in section 56 (2) (a) (written
consent, mentally sound, older than 18 years,
includes umbilical cord progenitor cells) to
any prescribed institution or person for any
purpose contemplated in section 64
(therapeutic, including the use of tissue in a
living person)
• Interpreted: private donor could donate cord
blood
Policy and Regulations
• These have been circulated and published for
comment, but are clearly flawed
– Address the key issues of safety, quality, control,
oversight and accreditation
– Definitions of stem cell types unclear
– Only siblings or family members may receive
stored transplants
– Does not address the issues of public and private
umbilical cord banks appropriately
Policy and Regulations (2)
– Regulation 7 states that: “An authorised stem cell
establishment shall operate as a non-profit
making entity”
– Regulation 7 also states that “Stem cells obtained
for later therapeutic use must only be obtained
from high risk families.”
• Effectively excludes SA Bone Marrow Registry
Unequal Biological Access
– In the domain of a public cell bank
– Public cell bank should reflect the biological
diversity of the South African population
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•
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Maximising coverage by storing most common
haplotypes
Equal chance strategy through a randomised process
of inclusion
Ethnic representation to make the cell bank useful to
the same percentage from each ethnic category
After Suzanne Holland
Way forward
– National Policies, Health Act, and Regulations should
promote cord blood donation, but acknowledge the
right to private storage
• Legal framework should be limited to assuring safety,
standards, quality issues
• Issue of a public cord cell bank must be addressed
– The private cell banks should recognise the principle
of solidarity and use some of their resources to
further, in partnership with the State, societal needs,
particularly the issues of ethnic imbalance of
donor/recipient and accessibility of cell therapy to the
needy
Conclusions
– Stem cell therapy is a rapidly developing discipline
– It is associated with particular social values and
relationships, but there is a place for an economic freemarket approach to realise optimal outcomes
– The issues of social justice are important, but equally so
are the human rights issues relating to freedom of choice
and control over one’s body
– Legislation should focus on safety, standards and oversight,
but not be restrictive and prohibit and stifle innovation in
the discipline of cell therapy
– Achieving synergy between public and private initiatives to
deliver cell therapy to all the people of South Africa should
be a high priority and be optimised