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The Intersection of Ethics, Law and Health

The Intersection of Ethics, Law and Health. Dr Austen Garwood- Gowers Nottingham Trent University, United Kingdom Ethics Seminary, Guayaquil, March 2011 . Historical Aspects.

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The Intersection of Ethics, Law and Health

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  1. The Intersection of Ethics, Law and Health Dr Austen Garwood-Gowers Nottingham Trent University, United Kingdom Ethics Seminary, Guayaquil, March 2011

  2. Historical Aspects • Intersection of health and ethics long understood especially with regard to justifying intervention, patient data and quality of care. • Protection of these areas reflected in application of: - general criminal, civil and public law protections of bodily integrity. • - criminal and civil protection of confidentiality and public law right to private life. - civil and even criminal protections against negligent behaviour. • Also early development of specific health legislation on abortion, public health, mental health, anatomical examination of cadavers etc.

  3. Toward Modern Times • Growth in legislation in new areas, for example - assisted reproduction - capacity and treatment of the incapable - new forms of medical use of human body like bio- banking and transplantation • Value of codification recognised • Also a response to developments, particularly in biotechnology. • ‘Hard law’ protections supplemented by more standard setting documents produced by medical institutions, governments and professional groupings.

  4. From National to International • 20th Century hard and soft law increasingly expands to regional and global levels. • Better protection of human beings in the wake of the terrible atrocities of World War II. • General human rights frameworks emerged. • Also impulse to generate frameworks specific to the protection of rights in health • New wave of these in the late 20th century.

  5. Global General Human Rights United Nations Charter 1945 Universal Declaration of Human Rights1948 (UDHR) The International Covenant on Civil and Political Rights 1966 (ICCPR) UN Convention on the Rights of Persons with Disabilities 2006 (CRPD)

  6. Regional – European Convention on Human Rights (1950) Also generated in wake of World War II horrors. Range of rights relevant to protecting human beings in the medical context. European Commission on Human Rights started in 1954, European Court of Human Rights started in 1959, taking sole charge of generating jurisprudence in 1998. Convention jurisprudence exists on a wide range of medical issues making it a useful model.

  7. Protection of Embryo and Rights of Pregnant Woman Demand for protection of the foetus under Art 2 right to life has failed: Paton v UK (1981) 3 EHRR 408; Vo v France (2005) 10 EHRR 12. Member states powerful ‘margin of appreciation’ to determine their national position. Means challenges to restrictions on abortion usually fail: Bruggeman and Scheuten v Germany App No. 6959/75, claimants A and B in ABC v Ireland (2010) No. 25579/05.

  8. Protection of Embryo and Rights of Pregnant Woman The only successful challenges have been where the Court can criticise the member state as internally inconsistent: • Tysiac v Poland (2007) 1 FCR 666 state lacked a mechanism for women to challenge decisions that they didn’t meet legal criteria for abortion (Art 8 private life); • C in ABC v Ireland – law allowed abortion where woman’s life at threat but difficult to obtain in practice (Art 8 private life); • Open Door Counselling & Dublin Well Woman Clinic v Ireland (1992) 15 EHRR 244 – abortion was legal to protect life so totally prohibiting provision of information & counselling about it was excessive (Art 10 freedom of expression).

  9. Assisted Suicide No right to assist suicide (R v UK (1983) 33 DR 270) or to be assisted (Pretty v UK (1983) DR 33, Haas v Switzerland No 31322/07) Desire to be assisted is part of the autonomy protected by Article 8 but states can argue that the interference is justifiable where it is laid down clearly in law But Court has focused on dangers to others if assisted suicide is allowed not on the argument that it is intrinsically wrong (contrast Canadian case of Rodriguez v British Columbia [1993] 3 S.C.R. 513). This has already come back to haunt the UK …

  10. Examples of other areas Detention in cases of mental health – range of cases under Article 5 Forced treatment of incapable adults and minors raises Art 8 private life and Art 3 inhuman and degrading treatment issues, see e.g. X v Denmark (1983) 32 DR 282, Herczegfalvy v Austria (1992) 15 EHRR 437 Treatment of child without regard to parental rights – Glass v UK (No. 61827/00, §§ 74-83, ECHR 2004-II); Routine police retention of samples from those who have been charged but not prosecuted or though prosecuted not convicted – violation of Art 8 (Marper v UK (2008) ECHR 1581)

  11. Examples of other regional instruments backed by Courts Other regions of the world have dedicated human rights frameworks and are building up a body of jurisprudence that includes health cases. Banjul Charter (African Charter on Human and People’s Rights 1981) – small body of case law American Convention on Human Rights 1969 - various provisions applying to health field. Case law example: Victor Rosario Congo v Ecuador, Inter American Commission of Human Rights Case 11.427 Case No 63/99 (1999)

  12. Global human rights instruments in the health field Key instruments include: • UNESCO’s Universal Declaration on the Human Genome and Human Rights 1997 (UDHGHR) and • Universal Declaration on Bioethics and Human Rights 2005 (UDBHR) • Council of Europe’s Convention on Human Rights and Biomedicine 1997 (CHRB)

  13. Global human rights instruments in the health field Key instruments include: • UNESCO’s Universal Declaration on the Human Genome and Human Rights 1997 (UDHGHR) and • Universal Declaration on Bioethics and Human Rights 2005 (UDBHR) • Council of Europe’s Convention on Human Rights and Biomedicine 1997 (CHRB)

  14. Convention on Human Rights and Biomedicine as an exemplar • Preamble - developments in medicine and biology should be used solely for the benefit of current and future generations, individual and human species should be shielded from threat • Article 1 : ‘Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.’ • Article 2: ‘The interests and welfare of the human being shall prevail over the sole interest of society or science’.

  15. Establishing Normative Interrelationships DIGNITY Equality Identity Non-artificialisation of life Non-commodification Integrity (psychical and physical inviolability) Autonomy (freedom from and freedom to)

  16. Applications of Convention’s emphasis on human rights and dignity Equitable access to healthcare (Art 3) Professional standards (Art 4) Consent and intervention without it (Art 5-9) Private life and right to information (Art 10) Controls on genetics and prohibition of discrimination (Art 11-13) Research (Art 15-18) Living donation of organs and tissues for transplant (Arts 21-22) Various additional protocols such as on cloning, research

  17. World Medical Community Instruments World Medical Association (WMA): • Declaration of GenevaPhysicians Oath1948 • International Code of Medical Ethics 1949 • Built on the doctors trial and Nuremburg Code through the Declaration of Helsinki Council for International Organizations of Medical Sciences in collaboration with WHO: International Ethical Guidelines For Biomedical Research Involving Human Subjects 2002

  18. Regional and Global Provision: Imposition or Necessity? Not imposed - commitments that states choose to make Human rights and dignity belong to the people – government should cherish and protect Regional and international frameworks exert moral, political and legal pressure on states to ensure that they protect.

  19. Total scope of domestic, regional and international provision • Going beyond vision of governance of the doctor-patient relationship envisaged in ancient codes such as the Hippocratic Oath • Not just about new bioethics/law stemming from biotechnology • Also growing global emphasis on extending protection beyond so-called first generation civil rights…

  20. Total scope of domestic, regional and international provision • Health is ultimately about well-being – everything! • Ecuador constitution rights: water (Art 12); nutritious food (Art 13); good environment (Art 14); protection of vulnerable classes (Art 35); decent life & personal wellbeing (Art 66). • Banjul Charter (African Charter on Human and People’s Rights 1981): - Union Interafricaine des Droits de l’Homme v Zaire (Communication 100/93); - The Social and Ecomonic Rights Action Center and The Center for Economic and Social Rights v Nigeria (155/96)

  21. Nonetheless, still some issues… • Pace of technological change outstripping ethico-legal discourse • International and regional instruments have only brought partial convergence at the national level • Convergence is only good if the approach that is being converged on is a good one • Unnecessary duplication – too many instruments/provisions to consider – potentially confusing for practitioners • Alignment problems – both between instruments and between different provisions within an instrument • Case study; respect but conflicting emphasis on medical use of the human body at the cost of respect

  22. Medical use at the cost of respect • In transplantation, medical research, bio-banking etc. • Often targeted at specific classes . • Most domestic provisions allow use of the body after death for transplant and other purposes without requiring consent to this prior to death. • Some instruments have provisions which appear to dilute protection of the incapable in research, in conflict with their overarching emphasis on respect: - Principle 27 of the Declaration of Helsinki - Art 17 of the CHRB - Mental Capacity Act 2005

  23. Also a problem of practice and enforcement of law • Patterns of practice often seek out all vulnerable classes for use. • Reinforced by inadequate rule enforcement, e.g. - abuses in research - abuses in the field of use of human tissue and organs

  24. Also underpinned by theoretical support

  25. Addressing the shortfalls • State and medical profession duty to avert/provide redress for medical abuse. • Duty usually legal as well as moral & political. • But history shows public can’t simply leave protection to authorities. • Public must monitor, encourage and pressure for highest level of protection.

  26. References/further reading • Dute, J. (2005), The Leading Principles of the Convention on Human Rights and Biomedicine, in Health Law, Human Rights and the Biomedicine Convention, edited by M. Nijhoff, Leiden: MartinusNijhoff Publishers, 3-12. • Gadd, E. (2001), General Provisions of the Convention. Journal International de Bioethique 12(1): 21-49. • Garwood-Gowers, A. (2006), Vindicating the right to bodily security of the incapable in research. Journal of Mental Health Law, 7-25. • Garwood-Gowers, A. (2008), The right to bodily security vis-à-vis the needs of others, in Autonomy and Human Rights in Healthcare: An International Perspective, edited by Weisstub, D and Diaz-Pintos, G. London: Springer, 375-397. • Kayess, R. and French, P. (2008), Out of darkness into light? Introducing the Convention on the Rights of Persons with Disabilities. Human Rights Law Review 1- 34. • Palazzani, L. (2008), Person and Human Being in Bioethics and BioLaw, in Autonomy and Human Rights in Healthcare: An International Perspective, edited by Weisstub, D and Diaz-Pintos, G. London: Springer, 89-98. • Zilgalvis, P. (2001), The European Convention on Human Rights and Biomedicine: Its past, present and future, in Healthcare Law: The Impact of the Human Rights Act 1998, edited by A. Garwood-Gowers, J. Tingle, T. Lewis, London: Cavendish.

  27. Workshop on Respecting the Human Being in Healthcare Austen Garwood-Gowers Nottingham Trent University Ethics Seminary, Guayaquil, March 2011

  28. Introduction • Respect for the human being is perhaps the key issue in healthcare law and ethics • In this workshop the plan is to: - Look at different case studies relating to it; - Discuss relevant ethical principles raised; - Identify relevant elements of instruments; - Critically consider possible solutions; and - Draw out wider lessons from the case studies.

  29. Consider in groups; what does respect for human beings mean? • How would you personally define what a philosophy of respect for the human being means? • How does this relate to other philosophies, including your own? • What are the overarching provisions, if any, that relate to respect in your instruments and how do they affect your thinking, if at all?

  30. Examine these case studies and apply your instruments to them. What are the ethical principles at stake? Relevant Articles? How might these Articles apply? Is the potential outcome one you agree with?

  31. Consent and capacity issues • Che, a man who is diagnosed as having a mental disorder, wants to argue that since he has capacity to make decisions he should not be forced to have treatment. • Fidel, a minor who has capacity, complains that he has less control over his decisions than a capable adult. • Pablo argues that when the Court examines the interests of minors it should not simply substitute its own view for that of the parents but should give priority to the approach of parents unless this is wholly unreasonable. • A local hospital wants to force a blood transfusion on Isabella, a Jehovah’s witness who has capacity, on the basis that if she dies it will leave the state with the financial burden of caring for her children. • Advise project prevention who wish to give people who are drug addicts $300 to accept sterilisation. • Advise a group called Norm who argue that circumcision of male babies should not be allowed except where medically justified.

  32. Beginning of life issues • Joanna and Sylvia, a lesbian couple, want to use in-vitro fertilisation to have a baby and to select a female embryo to implant. • Cesc, who is in prison for at least 5 more years, wants to send his sperm by post to his 35 year old girlfriend. • Elisabeth wants to use genetic diagnosis to identify which or her in-vitro embryos is free of an inherited genetic problem and is genetically matched with an existing child with that condition. She hopes to implant such a foetus and at birth use stem cells from the blood of its placenta to treat her existing child. • Francesca has a serious eye condition, continuing with her pregnancy may leave her blind, she wants an abortion. • Ilona wants to use prenatal testing to help avoid having a female child. • The authorities wish to detain Katherine, a drug addict, during her pregnancy in order to prevent harm to the foetus.

  33. Ending of Life Issues Carlos, a capable adult, wants to commit suicide without anybody stopping him. Maria, a capable adult, wants to have assisted suicide. Her husband is willing to provide the assistance. Hugo, a capable adult, does not want continued ventilation, withdrawal of which is almost certain to lead to his death. Sandro has a wasting condition and is worried that the health service will leave him to die painfully via loss of hydration and nutrition. He wishes to argue that he has a human right to not die a painful death when this can be avoided. Helena has an embryo which is encoded to twin but the division does not fully occur. Advise the local hospital who, after birth, want to split the single physical mass, which two beings are associated with. The intervention will cause the ending of the life of one being but will almost certainly protect the other. Jane has been diagnosed as being in a ‘vegetative state’ for the last three years. The hospital want to stop providing artificial ventilation, nutrition and hydration.

  34. Medical Use Issues • Lula, an adult lacking capacity, complains he is subject to research intervention inconsistent with his interests. • Manuel complains that the law does not protect his bodily inviolability because it allows intervention on him after death without his specific informed consent. • An indigenous group seek assistance to identify why they have a high rate of diabetes. However, researchers plan to secretly test their samples for other diseases and to identify their overall genetic makeup and heritage. • Zenda, wishes to force her cousin to donate bone marrow • Jenny agreed to participate in a bio-bank. The Government now want to examine the bank’s DNA records to help detect crime. • The government develop a system of ‘presumed consent’ under which unless you specifically refuse they presume you agree to your national health service data being used in a national bio-bank run for profit in your country by a private company.

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