Social Justice and Human Rights

1. Social Justice and Human Rights Anthon Heyns Bioethics Forum 15 June 2007

2. 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.

3. 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

4. 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

5. 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?

6. Allocation of finite resources • Central question in democratic societies: • How do we allocate our finite health care resources in ways that are socially just?

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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 • Intellectual property and expertise • Staff • Equipment • Cryostorage facilities • Financial support

15. Bill of Rights issues (S. 27) • Everyone has the right to have access to • health care services, including reproductive health care; • The state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation of each of these rights.

16. Bill of Rights issues (S 12) • Freedom and security • 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.

17. Bill of Rights issues (SAHRC 2004) • Right to health is not a right to be healthy • 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

18. 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

19. 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

20. 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

21. 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

22. Unequal Biological Access • In the domain of a public cell bank • Public cell bank should reflect the biological diversity of the South African population • 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

23. 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

24. 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 free-market 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