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6. Western European case-study: The impact of advanced methods of medical treatment on human rights
Introduction
Artificial methods of procreation
Medical
genetics
Compulsory and mandatory medical examinations
Conclusions
Acronyms
Notes
AART HENDRIKS and MANFRED NOWAK
Progress in medical sciences and advanced treatment methods involves new challenges to humanity and the traditional regulation of societies. With the biomedical development, new opportunities and life perspectives have been created for those with previously intractable complications or health problems. Not only have the boundaries of life and handicaps been removed but, at the same time, new forms of procreation have been developed which have an enormous impact on our definitions of parenthood, family, descent, heredity, titles, and other concepts.
Since the Second World War rapid developments have taken place, particularly in the fields of medicine, biology, microbiology, and chemistry. Nevertheless, or maybe as a consequence, states face unprecedented problems in their endeavours to guarantee the fullest possible enjoyment of rights and fundamental freedoms to all their citizens and to regulate, and eventually to adjust, interhuman relations within their jurisdictions.
The experiences of the Second World War have also resulted in an important impulse to formulate and give legal protection to the inherent rights of human beings, on both a national and an international level. The tragic developments caused by the rise of totalitarian regimes in Europe left no doubt that the departure from democracy not only leads to a continuous destruction of the rule of law and human rights, but also endangers international peace and security. For the first time in history the international community fully realized the interdependence of peace, democracy, the rule of law and human rights. In the Preamble to the Universal Declaration of Human Rights, the United Nations recognized that "disregard and contempt for human rights have resulted in barbarous acts which have outraged the conscience of mankind" and that human rights are "the foundation of freedom, justice and peace in the world." Although Article 21 of the Universal Declaration proclaimed the right of every one to take part in the government of his country, democracy was not considered a requirement for membership of the United Nations.
Such a link between democracy and human rights has, however, been established by the Council of Europe. Article 3 of its Statute defines the principles of human rights, the rule of law, and a pluralist democracy as indispensable conditions for membership. These three principles have become the pillars on which the new identity of Western European societies rests. Authoritarian regimes such as Spain under Franco and Portugal under Salazar had no place in Western Europe as defined by the Council of Europe. When it became obvious that the Greek military regime under Papadopoulos in the late 1960s had seriously violated these principles, Greece was forced to leave the Council. Until the removal of the Iron Curtain Eastern European states were prevented from joining the Council, but as soon as they comply fully with certain minimum standards of a pluralist democracy, human rights, and the rule of law, they will be invited by the Committee of Ministers to become members. Hungary was the first former Communist state to join the Council of Europe on 6 November 1990, followed by Czechoslovakia on 21 February 1991. As of April 1991, Poland, Bulgaria, Romania, and Yugoslavia have consultative status with the Council of Europe, Poland probably being the next state to be offered full membership. By this policy the Council underscores its role as the major driving force for an all-European unification process based on the common cultural heritage of the "old continents." 1
The Council of Europe's human rights concept is defined by the European Convention on Human Rights2 and a number of other treaties, such as the European Social Charter and the European Convention for the Prevention of Torture. This concept is a traditional Western one with a major emphasis on civil and political rights, the rule of law and judicial safeguards for the domestic and international implementation of human rights.
Since the Second World War many Western European States, such as the Federal Republic of Germany, Italy, Spain, Portugal, Greece, Turkey, and the Netherlands, have adopted new constitutions in which domestic bills of rights and their protection by constitutional courts or similar organs play a very important role. In addition, the vast majority of the present 24 member states of the Council of Europe have incorporated the European Convention on Human Rights into their domestic legal order.3 Austria has accorded the rights enshrined in the Convention a directly applicable constitutional status equal to that of the traditional bill of rights.4 In the Netherlands the European Convention enjoys an even higher legal status than the comprehensive catalogue of human rights defined in the new Constitution of 1983.5 But even in the United Kingdom, which still adheres to a strict dualist system, the European Convention is regularly invoked before and by British courts.6 One may, therefore, conclude that the Convention and its dynamic implementation by the European Commission and the Court of Human Rights have established a common European order for the relationship between governments and the individual.7
There have been impressive developments in knowledge about the human body and mind, and the methods to be employed to adjust or change congenital qualities and disorders, since the Second World War. At the same time both the scope and content of some human rights have been evaluated, while new categories of rights have been conceptualized.
Changing moral and social values always have a considerable impact on the formulation, interpretation and - not least - the application of the rules of laws.8 In the framework of this study it is important to refer to the changing ideas on the state-citizen relationship as well as to modifications of the notion of the freedom of contract. Particularly since the late 1960s, there has been an impressive global process of citizens claiming better sabeguards for the protection of their rights and freedoms, in relation both to public authorities ("vertical relations") and to fellow-citizens ("horizontal relations"). In the vertical relationship there was the important development of citizens claiming the right to popular participation in the decision-making process in all sectors of social, economic, cultural, and political life. As a result of this "emancipatory process," the right to freedom of contract became restricted. Discrimination in social life, thus impeding access to social goods or services for human beings with certain traits, convictions, or characteristics, came to be considered unjustified and was made illegal. Policies were developed to guarantee equal access to goods and services to all citizens. Misusing power through defining the contents of an agreement to the disadvantage of a weaker party would make the contract void, as a legal basis was lacking. This process also had enormous repercussions for the health-care sector and in particular the physician-patient relationship.9
The right to health care is one of the rights that became internationally recognized as a fundamental human right after the Second World War. In this respect, both for physicians and patients, rights and duties were formulated, towards each other and towards third parties.10 It is important to note that, although sometimes erroneously referred to as such, there never has been formulated a right to health. A "right to health" can never be obtained, as it implies a right to a given good which cannot be formulated objectively and which thus cannot be protected.11
The right to health care can be defined as the right to share the benefits of health care and health services available in society. The right to health care is primarily an obligation imposed on states to provide sufficient means to guarantee its citizens a certain standard of health, as well as equal access to health services. The latter also follows from the anti-discrimination provisions, as contained in all major human rights instruments (see below). At the same time there rests an obligation on states to make the necessary (financial) investments in primary health promotion, health and professional education, modernization of equipment, etc.
So far the term "right to health care" has not been used in any of the major international human rights instruments. However, the right to health care can be derived from different formulations, such as: "a right to a standard relevant to health" (Article 25 of the Universal Declaration of Human Rights, UDHR); "a right to the enjoyment of the highest attainable standard of health" (Article 12 of the International Covenant on Economic, Social, and Cultural Rights, CESCR, and the Preamble to the Constitution of the World Health Organization, WHO); "a right to enjoy the best attainable state of physical and mental health" (Article 16 of the African Charter on Human and Peoples' Rights, ACHPR); "a right to the preservation of health" (Article 11 of the American Declaration of the Rights and Duties of Man, ADRDM); "a right to health protection" (Article 11 of the European Social Charter, ESC) and "a state of complete physical, mental and social well-being, and not only the absence of disease or infirmity, is a fundamental human right and ... the attainment of the highest possible level of health is a most important social goal" (Article 1 of the Declaration of Alma Ata). As a corollary to the obligations of states, individuals can invoke several rights and freedoms, which are inherent in the right to health care.
Three universally recognized human rights are particularly relevant for the protection of an individual's health and well-being against impairments by others:
1. The right to life (Article 3 of the Universal Declaration of Human Rights, UDHR; Article 6 of the International Covenant on Civil and Political Rights, CCPR; Article 4 of the American Convention on Human Rights, ACHR; Article 4 of the African Charter on Human and Peoples' Rights, ACHPR; Article 2 of the European Convention for the Protection of Human Rights and Fundamental freedoms, ECHR).
2. The prohibition of torture, maltreatment and medical experimentation (Article 5 of the Universal Declaration of Human Rights, UDHR; Article 7 of the Internation Covenant on Civil and Political Rights, CCPR; Article 2 of the UN Convention against Torture and other Cruel, Inhuman, and Degrading Treatment, CAT; Article 5 of the American Convention on Human Rights, ACHR; Article 6 of the Inter-American Convention to Prevent and Punish Torture, IACPPT; Article 5 of the African Charter on Human and People's Rights, ACHPR; Article 3 of the European Convention for the Protection of Human Rights and Fundamental freedoms, ECHR; and the Preamble to the European Convention for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment, ECPT).
3. The right to equality and non-discrimination (Article 2 of the Universal Declaration of Human Rights, UDHR; Articles 2, 3, 23, 24, and 26 of the International Covenant on Civil and Political Rights, CCPR; Articles. 2 and 3 of the International Covenant on Economic, Social, and Cultural Rights, CESCR; Preamble to the Constitution of the World Health Organization, WHO; Articles 2 and 18 of the African Charter on Human and Peoples' Rights, ACHPR; Article 1 of the American Convention on Human Rights, ACHR; Article 14 of the European Convention for the Protection of Human
Rights and Fundamental freedoms, ECHR; and the Preamble to the European Social Charter, ESC). National legislators and public health authorities should not restrict themselves to pursuing an active health-promotion and disease-prevention policy. As stated at the conference at Alma Ata (1978), health is more than the absence of disease or infirmity. Several other aspects are inherent in the right to share the benefits of health care. Health services should be geographically well distributed and accessible as well as affordable to all persons. The work of health-care providers and institutions must be of a high professional standard and based on practical, scientifically sound, and socially acceptable methods and technologies. Health education for the entire population and special educational and training facilities for health-care providers are essential to promote individual and community self-reliance. Health-care providers should work according to codes of professional medical ethics that can be assessed and judged by a competent administrative body, particularly in the event of a complaint by a patient. Special services and measures of prevention should be created for people who are sick or in need, such as pregnant women, children, handicapped persons, and other such groups.
As a general proposition it should be stated that the provision of health care must never be a means to curtail patients' rights, but should be aimed at the promotion of the autonomy and well-being of all persons.
While after the Second World War the establishment of health-care services, the development of new remedies, and the introduction of advanced treatment methods were in full swing, attention was also drawn to the rights and freedoms, of patients. The inherent tensions between these two developments were acknowledged and studies on the dilemmas for human rights that might arise from further developments in science and technology were recommended.12 It was obvious that any new methods of treatment or drugs could only be introduced after being carefully pre-tested, and this could well be on human beings. Thus, experimentation with treatment methods and drugs is a conditional stage in achieving higher standards of health.
There was a great impact caused by court opinions concerning the trial of persons accused of "war crimes and crimes against humanity," including "experiments with human beings." The statement by the Nuremberg court represents the most complete and authoritative statement of the law of informed consent to human experiments.13 In 1953 the very first declaration on patients' rights was prepared by Professor Dr A. Querido and Professor G. Kraus at a WHO seminar in Amsterdam. This clearly reflected the spirit of the post-war period of protecting patients against unsound medical interventions.14
In the 1960s the emancipation, participation, and democratization movements, together with the twentieth anniversary of the UDHR, provided important incentives for the discussion of patients' rights. At the 1968 International Conference on Human Rights in Tehran, it was slated that future efforts should be directed towards the implementation of the established human rights norms. In other words, the main focus changed, and from now on was aimed at human rights protection rather than their promotion. At the same time, the question of the impact of scientific and technological developments on human rights was raised. The Proclamation of Tehran stated that "while recent scientific discoveries and technological advances have opened vast prospects for economic, social, and cultural progress, such developments may nevertheless endanger the rights and freedoms of individuals and will require continuing attention." 15
Since the 1970s the rights of patients have been formulated on different occasions, on both the national and the international level.16 The American Hospitals Association promulgated a patients' bill of rights. WHO has set up various committees to make studies and recommendations in this area. Declarations and codes from the World Medical Association (WMA)17 and their national branches had (and have) an important standard-setting function. As a result of national discussions, rules defining the rights of the consumers of the health-care sector became further elaborated and embodied in enforceable rules of law.18
The rights of patients are based on two fundamental human rights: the right to health care and the right to privacy.
The right to privacy, as guaranteed in Article 17 CCPR, Article 8 ECHR, and Article 11 ACHR, reflects the old liberal idea that the individual should be protected against any undue interference with his or her private space and autonomy.19 In addition to the protection of one's family life, home, and correspondence, the right to privacy also protects the individual's particular identity, integrity, intimacy, autonomy, private communication, and sexuality.20
Autonomy means that an individual is completely free to arrange his/her private life in accordance with his/her own ideas and is responsible for his/her own life, as long as he/she does not interfere with the rights and freedoms of others.21 There is no consensus concerning the question of to what extent autonomy is fully covered by the right to privacy, or if this right has its own legal basis. Particularly in health law literature, autonomy, sometimes called "individual self-determination," is often referred to as a separate and inalienable right of individuals.22 The right to individual autonomy is not explicitly enshrined in any of the major international human rights instruments but can, at least partially, be derived from the right to privacy.23 Some scholars consider this right as one of the pillars of the internationally recognized human rights law.24
Apart from this discussion, there is agreement that autonomy ensures the right over one's own body, which even includes the right to suicide and to inflict physical harm on oneself. Consequently, every medical treatment, examination, or experimentation constitutes an interference with the autonomy of the individual. In the absence of any legitimate restriction of the right to privacy, medical treatment, examination, and experimentation may only be performed with the voluntarily given and informed consent of the person concerned.
Medical treatments also touch upon another aspect of the right to privacy, the protection of an individual's integrity. As against the absolute prohibition of torture and inhuman or degrading treatment or punishment contained in the CAT and the ECPT, Article 7 CCPR, Article 3 ECHR, and Article 5 ACHR only protect comparatively serious interferences with a person's physical or mental integrity.25 In addition, Article 7 CCPR contains a specific right not to be subjected to medical or scientific experimentation without a person's free consent. This particular right, which was inserted as a reaction to the medical experimentation performed in the Nazi concentration camps, only applies to medical experiments (and thus not to examinations and treatments) which amount to torture or cruel, inhuman, or degrading treatment. Whereas these serious interferences with a person's personal integrity are prohibited under international law without exception (even in times of a public emergency), even less serious medical treatments, examinations, or experimentations, such as compulsory testing against poliomyelitis or a compulsory blood test after an accident, constitute interferences with the right to personal integrity deriving from the protection of one's privacy. Consequently, these and similar interferences are only permitted if they can be justified under the limitation clauses contained in the relevant provisions of international human rights treaties.
While Article 17(1)CCPR prohibits any arbitrary or unlawful interference with one's privacy, Article 8(2)ECHR is much more specific. According to the ECHR an interference is only permitted if it is in accordance with the law and if it is "necessary in a democratic society in the interests of national security, public safety, or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others."
In the context of advanced forms of medical treatment and examinations, the protection of health and of the rights and freedoms of others seems to be the most relevant objective which could justify a particular interference with the right to privacy. A deeper analysis of the legal texts, the drafting history of the relevant treaties and clauses, and the jurisprudences of the competent organs shows what conditions eventually need to be fulfilled before a restriction of the right to privacy can be said to be justifiable.
A look into the travaux préparatoires of Article 17 CCPR26 shows that the limitation grounds listed in Article 8(2)ECHR are roughly what the drafters of Article 17 CCPR had in mind when they decided to prohibit any "arbitrary interference." Consequently, under both treaties restrictions of the right to privacy are only permissible if they
- are provided by and carried out in accordance with the law (i.e. a statute enacted by a legitimate parliamentary body or a similar common law norm),
- are in the interests of a legitimate objective such as the protection of public health or of the rights and freedoms of others,
- are strictly necessary in a democratic society to achieve such an objective, that is to say proportional to the goal, and
- are not imposed arbitrarily, i.e. in an unreasonable, discriminatory , or unproportional manner.
Since international human rights treaties are concluded by states, only states parties are directly bound by their provisions. Consequently, the obligations contained in such treaties, in particular the obligation to respect and ensure to all individuals the human rights enlisted therein, are obligations of states. In principle these obligations have an effect on the vertical relations between the individual and the state only. If, for example, a police officer is found guilty of having tortured a detainee, the state concerned has violated the right of the victim to physical integrity. If, on the other hand, a man is sexually abusing his wife and children, he commits a crime, but the state where this occurs cannot be held responsible for such crimes of private individuals. Only in exceptional circumstances, e.g. if the legal order does not at all prohibit and/or prevent the ill treatment of children or where a state incites hatred and encourages the use of force against certain population groups, the state concerned may be held responsible for a violation of the prohibition of torture on the horizontal level. This comparatively limited duty of states to protect human rights between private individuals (horizontal effects) derives from the obligation under international treaties, e.g. Article 2(1) CCPR and Article I ECHR, to "ensure" or to "secure" to all individuals the rights contained in the international instrument conceived. In addition to this general obligation, certain human rights provisions emphasize the duty of states parties to protect such a right by law. The International Covenant on Civil and Political Rights, for example, contains such a clause with respect to the rights to life, privacy, and equality and the rights of children and minorities.27 The explicit "right to the protection of the law against such interference" with one's privacy in Article 17(2) CCHR28 clearly shows the particular obligation of states parties to protect the right to privacy against interferences on the horizontal level.29 Although Article 8 ECHR does not contain a similar provision, the Strasbourg organs decided in a number of cases that states parties had not afforded sufficient protection to the right to privacy against interferences from private individuals.30
Since the physician-patient relationship is normally one between two private individuals, the horizontal effect of the right to privacy is of major importance for the evaluation of state obligations to prevent, inter alia, certain practices relating to mandatory medical examinations or genetic engineering. Thus, although in most countries the physician-patient relationship is covered by private law provisions, parties are not completely free to determine the contents of their contractual agreements. Following the positive obligations imposed upon states by the above-mentioned human rights treaties, there is a clear duty for states to protect individuals, particularly the "weaker contractual parties" (the patients) from inhuman and degrading treatment, medical experimentation, etc.
As regards advanced treatment methods and developments in the medical sciences to improve health-care provisions, we meet with a certain paradox. While the health-care system is built up to assist human beings in the preservation and promotion of their health, at the same time this system may threaten the privacy and integrity of individuals. Medical research may be conducted both in the general interest (scientific research) and in the individual interest (diagnostic research), and these need, not necessarily overlap.31 Human rights law has been structured to prevent human beings being used as "study and experimental objects" for health-care providers, instead of being the primary beneficiaries of the newest treatment methods. However, (bio-)medical sciences are developing very fast and are taking forms unforeseen by the drafters of most human rights treaties in force today. It may already be necessary to review and adopt legal safeguards to ensure that they will provide sufficient legal protection for the individual right to privacy under these changed circumstances. Health care, in the first place, should always be aimed at preserving and restoring a person's health, as this is considered a condition for the enjoyment of individual autonomy. However, it is debatable if an individual can be forced to undergo all kinds of medical treatment considered to be for the benefit of his/her own life. Here we come to the key question of to what extent an individual's will, in the form of "informed consent," is to be the basis of any form of interference with an individual's privacy and integrity, and under what situations others are permitted to make decisions on behalf of an individual.
It is important to note that in principle illness does not change the legal status of a person,32 although hospitalization, as well as the provision of a sickness benefit, may create new forms of dependency . In addition we should be aware that illness, like health, cannot be formulated objectively. The definition of illness, particularly mental illness, will always depend on cultural settings. Following the emancipatory process of the 1960s and 1970s, and the changed notions on the role of law, new Iegislation has been promulgated to protect the "weaker" and "more vulnerable" contracting party. Following two United Nations declarations at the beginning of the 1970s - the Declaration on the Rights of the Mentally Retarded Persons (1971)33 and the Declaration on the Rights of Disabled Persons (1975)34- it has notably been in Western Europe where rights of patients have been formulated, both on a national and on a European level.35
In this respect the institutions of the Council of Europe took a leading role by establishing different working groups and special committees of health experts, as well as by passing several recommendations and resolutions. One could mention the Recommendation on the use of human embryos and foetuses for diagnostic, therapeutic, scientific, and commercial purposes (1976), the Recommendation on the participations of the sick in their own treatment (1980), the Recommendation on automated medical data banks (1981), the Recommendation on the legal protection of persons suffering from mental disorders placed as involuntary patients (1983), the Recommendation on the legal status of physicians vis-à-vis their patients (1985), the Resolution of the Committee of Ministers of the Council of Europe on sterilization (1975), and the Resolution on removal, grafting, and transplantation of human substances (1978).36 With regard to the patient's right to privacy, special reference should be made to the Council of Europe's Convention for the protection of individuals with regard to automatic processing of personal data (1981).37
The World Health Organization, WHO (with its Headquarters in Geneva and its Regional Office for Europe based in Copenhagen) has made (and makes) efforts to bridge the differences between the various nations and groups of nations by collaborating with all states. WHO has been particularly successful in the coordination of AIDS control and HIV prevention programmes.38 With the support of public health experts from many countries, WHO tries to design a common strategy to fight AIDS/HIV infection, while respecting the rights and freedoms, as well as the human dignity, of people with AIDS and persons found to be infected with HIV, the agent causing AIDS. In times of epidemics, like AIDS, states may easily feel obliged to announce far-reaching and restrictive measures to control the disease and the behaviour of people infected.39 Thanks to the efforts of WHO and its regional offices, respect for human rights and dignity is now considered to be crucial and to be a condition for the success of any efficient AIDS strategy.40
The European Parliament, the parliamentary forum connected with the European Communities (EC), has also taken some major initiatives, such as the Resolution in which it requested the drafting of a charter of patients' rights (1984) and its Resolution on the elaboration of a European Charter on children treated in hospital (1986).41 The European Commission, the executive and policy-initiating body of the EC, has also shown a deep concern with health issues during the last decade, although less with patients' rights. Most attention has been paid to cancer, smoking, and AIDS.42 Within the Council of Ministers, the EC decision-making body, the Ministers of Health have emphasized the right to equal treatment and freedom of movement, as laid down in the EEC treaties on several occasions.43
In general it could be said that there is a major trend towards transforming obligations for physicians into rights of patients.44 On a national level the rights of patients have been incorporated into civil law, administrative law, and special regulations. Patients have also been provided with remedies to enforce their rights before courts or to submit complaints before special tribunals. These remedies, however, are not always comparable to remedies available through ordinary civil and administrative procedures, and may even give rise to questions regarding the principles of effective remedy, and the independence and impartiality of tribunals (Article 8, 10 UDHR).45 Special provisions have been made with regard to the composition of the judicial bodies and conditions to be fulfilled before lodging a complaint or suing a physician, which may imply important restrictions on a patient in obtaining a legal verdict.
While discussing patients' rights we should also be aware of the limitations on these rights and the possible counterbalancing duties of patients. In many countries, not only those restricted to the European region, the authorities have en forced regulations such as those relating to the mandatory notification of certain diseases, tracing of contacts, partner/contact notification, restrictions on the rights to freedom of movement, to found a family, or to work, and schemes for compulsory screening for certain diseases and physical disabilities.
In this paper we will focus on the major implications of advanced medical treatment methods on the rights and freedoms of the individual recipients of health care and all those who are confronted with the results of changes in the (bio-)medical sector as a result of ongoing technological and scientific developments. We will pay due attention to both positive and negative effects and assess their impacts. In some cases the introduction of new treatment methods may cause new contradictions in society. There will be groups that will benefit from the advanced therapeutic resources, while the rights of the members of other groups may become impaired. Though sometimes difficult to resolve, we shall seek a reasonable balance between conflicting rights on the basis of current international human rights law and the interpretation of the provisions by the relevant organs.
Our point of reference will be internationally recognized human rights law i.e. rights recognized by law46 - particularly as laid down and elaborated in the national and supranational legislative systems in our region, that is to say Western Europe. Although the discussion on justice, ethics, and health care takes place on the frontiers of disciplines such as social sciences, law, medicine, biology, microbiology, and chemistry, we will restrict ourselves to monitoring the situation from a human rights perspective. We are aware that scientific and technological developments can be used for the promotion of human rights and to ensure better protection of recognized rights and freedoms, although at the same time they may imply threats to the enjoyment of some of these rights. As the impacts of the rapid (bio-)medical developments and experiments have still far from crystallized, we will operate with a certain degree of caution. It has been our main objective to outline the direct implications of the introduction or expected introduction of advanced treatment and testing methods and techniques on the enjoyment of human rights. Consequently we will indicate the most fundamental legal dilemmas we encounter, as well as the areas where legal regulations are missing or insufficient to provide clear guidelines for judging (bio-)medical practices or to protect the rights and fundamental freedoms of individuals/patients in the new situation. We will also make suggestions and recommendations when considered appropriate.