|The Impact of Technology on Human Rights: Global Case-studies (UNU, 1993, 322 pages)|
|6. Western European case-study: The impact of advanced methods of medical treatment on human rights|
Patients request their physicians to carry out medical examinations in order to acquire information on their susceptibility to certain diseases or to obtain general or specific knowledge on their health status. In other cases physicians take the initiative for such examinations if they have had certain objective suspicions or doubts about the patient's health and consider that more detailed diagnosis could be helpful. Depending on the nature of the "complaints" or other criteria, some physicians carry out medical examinations on a routine basis. the latter procedures also depend on national health practices and the rules governing the patient-physician relationship.
In exceptional cases, specific health-related examinations are carried out on a mandatory or on a compulsory basis.127 Health authorities used to state that they needed precise epidemiological data on certain prevailing diseases to design accurate and appropriate health intervention policies. There have been cases in which the results of a medical examination have been used as a basis for ostracizing or isolating "contagious" citizens or denying entrance to the country to aliens with specific diseases. The latter policy in particular has been applied in cases of epidemic diseases. , such as bubonic plague, typhoid, poliomyelitis, cholera, etc.128 It is obvious that such testing policies jeopardize the right to the protection of private life and a person's physical integrity. In this section we will analyse the circumstances under which human rights law justifies the carrying out of compulsory or mandatory medical examinations, and which entities are authorized to do so.
With regard to medical examinations, we have first to give a more precise definition of such an examination. Within the framework of this study we understand by a medical examination all methods used to obtain information on an individual's physical health status in the broadest sense. Such examinations include health status questionnaires, tests of a predictive nature such as those to measure a person's medical biology or susceptibilities to diseases, and tests to measure a person's consumption pattern, such as for alcohol or drugs. Owing to their impact, the definition also includes tests carried out in relation to human procreation and prenatal diagnostics. Following this definition, medical examinations are not always bodily invasive- and thus do not automatically interfere with a person's physical integrity.
Testing methods have developed in a revolutionary manner in the past decades. This has gone hand in hand with the technological innovations that have radically changed our societies. To an important extent, the development of more sophisticated testing methods has been made possible through better insight into and understanding of the human being's inherited substances (see section on "medical genetics").
Since these advanced diagnostic techniques are available, medical examinations are frequently carried out in both medical and non-medical settings. In the latter situation the examination is often prescribed by non-state entities. While for employers medical examinations have become a means of selection, for insurance companies they are an instrument to assess their financial risks in accepting an individual. Medical examinations can also be used as legal evidence in civil and criminal proceedings (e.g. to measure the level of alcohol in a person's blood or to identify sexual offenders). Here several human rights questions arise, notably those concerning the legitimacy and proportionality of the interference with an individual's privacy as well as with his/her physical integrity.
Taking into consideration the risks involved and the possible far-reaching consequences of a particular test result, there are clear requirements concerning the persons authorized to carry out a medical examination and the way in which to do so. As a general rule only persons with an acceptable medical background and who are licensed as a "physician" are entitled to do so.129 Their educational background should be a guarantee of their skill in making the most accurate diagnosis of an individual case, without exposing the person concerned to unnecessary risks or causing avoidable injuries. At the same time professional codes oblige physicians to exercise the greatest possible care within the physician-patient relationship, particularly with regard to confidentiality and the storage of personal information.130 Some of these provisions are also incorporated in legal codes, which give patients a remedy in case they feel that their physician has infringed his/her duties.
It is important to note that medical examinations are primarily a means by which medical sciences are used to assist an individual by providing him/her with personal health information, eventually enabling him/her to ask for medical intervention or to take appropriate precautionary measures to prevent the outbreak of disease. Since more advanced genetic examination methods have been developed, personal-health-related information can be obtained and used as an aid for procreative decisions or to calculate a person's life expectations. Medical examinations traditionally belong within the framework of the physician patient relationship and therefore the rights and duties of both parties fully apply in the examination situation.
The results of a medical examination and other information concerning a person's health status can be defined as "privacy-related data" and consequently enjoy the protection of the right to privacy (see Introduction). The unauthorized disclosure of health information is considered to be a "breach of confidentiality," and is regarded as an interference with the right to privacy. This may also hold true for passing health-related information to a spouse/partner and relatives.131 In this section we will analyse the circumstances under which such interferences with a person's privacy can be justified and what conditions have to be fulfilled.
Owing to its sensitive nature, in Western Europe health information may not be processed automatically, "unless domestic law provides appropriate safeguards" 132 The implications for threats to privacy are clear. Although the importance of this issue can hardly be overestimated, we have decided not to elaborate on it and to confine ourselves to the legitimacy and legality of mandatory and compulsory medical examinations as such.133
The Principle of "Informed Consent"
As a medical examination is a far-reaching intervention in an individual's private life and often also his/her physical integrity, the usual procedure requires that the person, or institution, prescribing such an intrusion into a person's privacy obtain the testee's freely given consent to carry out the examination. Within medical settings, as in health legislation and medical ethics, the term "informed consent" is commonly used to express the patient's willingness to under-go an examination (or other medical treatment) and thus accept a breach of his/ her privacy and physical integrity.134 It is important to note here that a person can only agree to undergo a medical examination after having acquired sufficient knowledge and understanding of all elements and implications of the examination so as to enable him/her to make a carefully considered decision. The person concerned can only give his/her voluntary consent when he/she can exercise free power of choice without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion. Moreover, the individual should also have the legal capacity to give consent.
If all these conditions have been fulfilled and if the individual gives his/her "informed consent," then we can speak of a voluntary medical examination. Such an examination does not constitute an unlawful restriction of a human right, as the individual concerned has voluntarily accepted such an interference with his/her privacy and physical integrity. Freedom of contract is part of one's individual autonomy. An individual is free to give up one or more assured rights or freedoms when this is for the best for that individual (e.g. to obtain a diagnosis in order to improve one's health perspectives).
The "informed consent" principle, which directly derives from the right to privacy, can only be overruled in exceptional cases. Under human rights law, forced intervention with an individual's privacy is only justifiable when the measure is founded on a legal provision, serves a legitimate aim, is proportional, and fulfils a pressing social need.135 It is even argued that a state should approve of such a measure only on the basis that there is no alternative, less intrusive, means available to get a comparable result.136
The protection of public health is mentioned in Article 8 ECHR as one of the grounds that can be invoked to restrict the individual's right to privacy. However, this does not automatically justify the restriction. We will further elaborate on this below. It is crucial to know, however, that generally a person's "informed consent" is required to carry out a medical examination. In exceptional and narrowly described cases, the "informed consent" rule can be omitted.
The "informed consent" principle is not only the leading principle for carrying out a medical examination: it is also a necessary condition for confronting him/her (or third parties) with the test results. One should realize that the "informed consent" principle in the case of a medical examination is many-sided. First of all, the testee should agree to be treated by a particular health-care provider (freedom of contract). Secondly, the testee should consent to all the medical treatments he/she will be subjected to and indicate what the health-care provider is allowed to do with the test results (the follow-up stage). Both parties to the contract should have a clear and similar understanding of the contents of the freely reached agreement.137
With regard to the disclosure of the results of a medical examination, the parties should determine to whom, if anybody, the test results will be passed. There are, for example, testing programmes that take place within the context of epidemiological research, for example to measure the prevalence of certain traits in a sample population. In these situations it is not uncommon for the trial subject not to be informed about the results of the individual examination.338 On the other hand, in the case of a medical examination carried out on the initiative of a patient, it is most unusual for the test result to be withheld from the patient.139
For the purpose of this study it is important to note that personal health information is considered to be a personal good.140 Therefore it is up to the testee to determine who can have access to this information. In the case of a medical examination, a testee is justified in determining that he/she does not want to know the test result himself/herself (the right not to know). A physician is only authorized to disclose the test result to the testee after the testee has voluntarily agreed ("consented after having received all information") to receive these results. A physician who nevertheless decides to pass the test result to the testee may be found guilty of violating the privacy of the testee.141
Closely related are the situations in which a physician by coincidence discovers some important facts concerning the health status of a patient during a medical examination. The "informed consent" rule states that this information can only be passed to the individual if he/she has previously indicated willingness to receive such information. In these kinds of situations, the "informed consent" rule should not be interpreted too rigidly. The physician should weigh up the testee's psychological make-up and consider all foreseeable advantages and disadvantages before deciding whether to confront the testee with the information or not. In the event of the discovery of a disease or disability, an important factor will be if there is or is not a cure or therapy for the diagnosed disease or disability. After having carefully considered all these questions, interference with the testee's privacy may be declared justifiable, despite the fact that the testee's "informed consent" was missing.
Compulsory Medical Examinations by the State
Within the context of human rights laws, states are authorized to take certain measures entailing compulsion even if these interfere with one or more recognized rights or fundamental freedoms. The grounds for promulgating such measures are generally embodied in a general or specific legal provision. For a number of human rights this is even explicitly prescribed, as if to guarantee the fullest possible enjoyment of these rights. 142
As stated above, a medical examination as such interferes with the testee's privacy, and often also with his/her physical integrity.143 The international human rights treaties in which the right to privacy is contained permit states to restrict this right under a number of circumstances. Although the conditions in which this can be done are usually quite clear, the grounds on which a state should make its decision are of an uneven nature and not always very evident, and are thus difficult for an outsider to weigh. States often have to balance the interests of individuals against the interests of the community - sometimes a very difficult task.144 Here it should be noted that states have a responsibility to protect general interests, among them "national security, public safety," as well as "health. . . and the rights and freedoms, of others," and thus are justified in promulgating appropriate measures, even if they thereby restrict an individual right, such as the right to privacy. Though, according to the general principles of public action, these measures should be relevant, proportional, effective, feasible, and ethically acceptable, and should balance conflicting values, states possess rather broad discretionary powers to weigh these different interests.145 The Strasbourg organs have adopted the margin of appreciation doctrine, with reference to the "responsibilities of Government for maintaining law and order. . ." 146 Therefore it cannot always be said that these organs "ensure the observance of the engagements undertaken by the High Contracting Parties in the present Convention" (Article 19 ECHR).147 Nevertheless, in the course of years the contents of the several "justifiable aims" have crystallized, if not directly by way of judicial decisions then at least indirectly by statements made by legal experts and authoritative international bodies and in the literature.
In order to avert threats to public health or for any of the other policy goals which may be invoked as a legitimate reason for restricting human rights, states have repeatedly imposed far-reaching restrictions on individuals with diseases that might give rise to quarantine.148 The danger that another person may be exposed to the risk of acquiring a serious - and maybe fatal - disease which might easily have been avoided is a serious threat to his/her right to life and a breach of the prohibition of inhuman or degrading treatment.149
Compulsory testing, however, was, and can only be considered, a justifiable interference with the individual's privacy when it is considered the most efficient means of halting an infectious disease. In other words, the infringement of the individual's privacy (and physical integrity) may be considered necessary when thereby the spread of a contagious - and dangerous - disease can be prevented. This particularly holds true for diseases. in which infection may take place through simple physical proximity or casual human contact, such as plague or tuberculosis.
Compulsory testing can also be considered if there is evidence that a person is wilfully spreading a disease, thus threatening the rights and freedoms, of others. Here a medical examination may be considered in an individual case, generally in the context of a criminal charge against the person concerned. Penal law may prescribe the subjection of the suspected person to a number of examinations essential to determine the rightness of the claim.150 The European Commission of Human Rights has repeatedly stated that medical (and psychological) examinations may be an essential component of the preliminary investigation and justify the interference with the rights and freedoms of the suspected person.151
In Western European countries, contagious diseases are generally dealt with in the infections (or epidemic) diseases. laws, or an appendix thereto. The harm and human suffering these diseases may cause to others were considered of such importance as to justify a systematic policy of trying to identify persons who may be infected. In the first place this includes the group of persons to whom, there are objective reasons to believe, transmission of the disease (or virus) has taken place. These contact-tracing policies almost automatically include compulsory testing of these contacts in order to be able to contain the disease. Here the rights and freedoms of others are considered to outweigh the right to privacy of the individual.
With regard to these restrictive measures, it should be noted that there is a general trend to use legislation in a supportive way in the field of protection of public health. Legislation should first and foremost enable the implementation of efficient and humane prevention and information policies. This was reflected by the list of recommendations accepted at a European consultation on "Health Legislation and Ethics in the Field of AIDS and HIV Infection" (Oslo, 26-29 April 1988). Some of the recommendations read as follows:
2. Existing laws for the prevention and control of infectious diseases should be reexamined to ensure that they are up-to-date to deal with this epidemic and to protect the rights of the individual and the community [emphasis added];
3. Traditional legislative measures in the field of public health should be re-evaluated to assess their effectiveness and the ethical acceptability in relation to this epidemic;
4. Health legislation should be used in a positive way to promote and support health education and the distribution of information that can be provided by the public with the means for voluntary behavioural change [emphasis added];
5. The importance of certain long-standing legal provisions, particularly those for confidentiality, must be re-emphasized. Clearly, the maintenance of confidentiality is too often threatened by administrative, technological and other developments.152
Although a state can still decide to pursue a policy of compulsory medical examinations, from a human rights and public health perspective there are two other factors that should always be weighed before a decision is actually taken. Discrimination and stigmatization of persons with the disease (or infection) concerned and all those perceived to be "at risk" is a frequently reported human reaction, particularly in case of a fatal disease. It is now acknowledged that discrimination and stigmatization can undermine the overall objectives of public health policy. The people concerned may actively avoid any contact with the health-care services out of fear of becoming further marginalized. With regard to AIDS this was stated at a UN/WHO consultation as follows:
5.9 To prevent HIV infection actively, persons whose behaviours place them at risk of exposure to HIV must be informed, educated and provided with health and social support. Persons suspected or known to be HlV-infected should remain integrated with society to the maximum possible extent and be helped to assume responsibility for preventing HIV transmission to others. Exclusion of these persons would be unjustified in public health terms and would undermine the public health programme to prevent HIV.
5.10 For these reasons, discrimination endangers public health; stigmatization itself represents a threat to public health. In summary, protecting human rights and dignity of HlV-infected people, including people with AIDS, and members of population groups, is not a luxury- it is a necessity...153
The conclusion is that states may engage in a policy of compulsory examinations, although for public health reasons this is only justified as an appropriate measure to contain a disease in a very restricted number of situations. The rights of the individual should be carefully weighed against the rights of the community, notably the right to health care and the rights and freedoms of others. Moreover, the principle involved points to the duty to study the possibility of achieving the desired results by less restrictive measures, e.g. policies aimed at promoting particular health styles and informing people how to avoid risky contacts.
Mandatory Examinations by Private Individuals, Companies, and States
As briefly indicated above, there is an undeniable trend to apply medical examinations in a wider and particularly in a non-medical context. Although a person's health status is in the first place of relevance to the person concerned, it is obvious that it has various implications for others as well. An employee who becomes unfit to perform his/her work generally claims alternative work, thus affecting the labour process, or may even apply for a disability benefit, thus placing a financial burden on the employer and/or insurance company. Early death increases the chances that the spouse/partner will claim a benefit, etc. These and other reasons explain why many private individuals (in their personal capacity or as representatives of a private company or state institution) have a strong interest in obtaining personal health information from private citizens. particularly since some of the life inconveniences can be calculated by subjecting individuals to a predictive medical examination. The interest in obtaining such information is particularly strong in cases where a party takes a financial risk by entering into a contractual relationship with another individual. Therefore the question arises to what extent private individuals, companies, or states are allowed to make access to a service or social good conditional on the results of a medical examination.
If the state provides for mandatory examinations, such an interference with the right to privacy is only permissible if it is imposed in accordance with the law, is in the interest of a legitimate objective as laid down in Article 8(2) ECHR, and is necessary in a democratic society, i.e. proportional to the objective aimed at. If a Traffic Road Act provides, for example, for a mandatory medical examination as a precondition to obtaining a driver's licence, such a regulation may be considered to be necessary in the interests of public safety, the protection of health and the rights of others. In order to fulfil the principle of proportionality the testing must, however, be restricted to medical requirements for driving a motor vehicle, such as an eye test. The medical examination of an aircraft pilot may obviously be much more demanding.
Much more difficult to answer is the question of where the limits for mandatory examinations by private employers, insurance companies, schools, etc., should be drawn. As has been explained in the introduction, both Article 17(2) CCPR and Article 8 ECHR provide individuals with the protection of the law against arbitrary and unlawful interferences with a person's privacy by another private person. In the exercise of their obligations to protect privacy against interferences on the horizontal level, states, however, enjoy a fairly broad margin of discretion. If a private company selects its personnel by means of a psychological test, or if a life insurance company makes its services subject to a medical certificate, certainly no duty of the state arises to prohibit such practices. Moreover, it would even be questionable whether such a legal prohibition would not unduly interfere with the freedom of contract (derived from the right to privacy) and the right to property of the company concerned. On the other hand, if a state were to enact, for example, a law prohibiting mandatory HIV tests of school pupils, such a law could certainly be considered as a legitimate protection against interferences by private or public schools. Whether a state is, however, obliged by virtue of Article 17(2) CCPR to enact such a law if negative HIV tests were made an admission requirement for private schools is doubtful. If only black, Jewish, Muslim, or female children were required by private schools to undergo a medical examination, this would constitute an arbitrary interference with their privacy, which a state would be under a legal obligation to prohibit. Otherwise it would violate its duty under Articles 2(1) and 17(2) CCPR to ensure to all individuals, without distinction on the grounds of race, colour, sex, or religion, the right to the protection of the law against arbitrary interference with their privacy. In the General Comment 16/32 of 23 March 1988, the Human Rights Committee has explicitly stressed the duties of states parties to the CCPR "to provide the legislative framework prohibiting such acts154 by natural or legal persons.'' 155
These examples show that the right to privacy affords a rather limited protection against mandatory examinations required by private persons or entities. Only in extreme cases do states have an obligation legally to prohibit interference with another person's privacy on the horizontal level. It is thus primarily in their discretionary power which cases of mandatory examinations they permit and which they prohibit in the interest of the right to privacy.
Another question is to what extent and in which cases it is permissible to make a selection on the basis of a person's health status. Making access to services and social goods, such as employment, social insurance, and education, conditional on a good health status might contradict the non-discrimination principle. It also creates problems concerning the duty of states to guarantee the right to work (Articles 6 and 7 CESCR and Articles 1 and 2 ESC), the right to social security (Articles 9 CESCR and 12 ESC), and the right to education (Article 13 CESCR and Article 2 of the First Additional Protocol to the ECHR). While, on the one hand, it can be argued that the duty to treat people equally only applies to situations in which people are really equal, it is clear that we are dealing with slightly different situations that may, however, be comparable. The key question is thus under what circumstances a person's health status is a justifiable selection criterion.
Article 26 CCPR entitles all persons to the "equal protection of the law. The law shall guarantee to all persons equal and effective protection against discrimination on any ground such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status." A person's health status is not included in this list. It could only be subsumed under the criterion of "other status." From this it follows that even a legal distinction based on a person's health status must be extremely unreasonable or arbitrary to constitute discrimination in violation of Article 26 CCPR.156 Consequently, the obligation of states to protect individuals against selection criteria by private companies based on a person's health status must be considered as minimal.157
The case may be different, however, if the enjoyment of human rights such as the right to work, social security, and education is made subject to a particular health status. According to Article 9 CESCR, states parties recognize the right of everyone to social security, including social insurance. If in a given state health insurance were only offered by private insurance companies, and if all of them refused to accept a person who had acquired a certain disease, this person would be denied a right to social insurance on the ground of his or her health status. Consequently, the state concerned would violate Article 9 in connection with the anti-discrimination clause in Article 2(2) CESCR. It would be under an obligation either to offer public health insurance without any distinction or to force private insurance companies by law to refrain from making their services dependent on the customer's health status.
The same argument holds true for the right to education and in principle also for other economic, social, and cultural rights, such as the right to work. If a private school owner, for example, refused admission to a child on the ground that he/she had a contagious disease such decision would not amount to discrimination as long as it could be justified as necessary to protect the right to health of other schoolchildren and/or the school's employees. Even the most contagious disease must, however, not deprive a child of its right to education under Article 13 CESCR. It is a duty of states parties under Article 2(2) CESCR to guarantee that all rights enumerated in this Covenant will be exercised without discrimination. In practice, however, there exists very little legislation regulating the selection procedures for employment,158 insurance,159 and education.
Passing of Medical Information to "Third Parties"
Confidentiality is the expression used to describe the special nature of the physician-patient relationship. According to the International Code of Medical Ethics of the World Medical Association, "A physican shall preserve absolute confidentiality on all he knows about his patient even after the patient has died." Passing personal health-related information to a third party without the patient's prior consent thereto is considered as an interference with the patient's right to privacy.160 A treating physician also has to respect secrecy in his relationships with physician colleagues.161 Although the physician's duty to respect confidentiality is not absolute,162 the legal dilemma is obvious. Deviations from these rules are only possible if all conditions to restrict the right to privacy are fulfilled (see above)163 or in the exceptional situation of conflicting duties164 for the physician.
Confidentiality is crucial to the patient-physician relationship. As long as a patient knows that all the efforts his/her physician makes are in the interest of his/her health, normally he/she will be willing to cooperate. Moreover, a patient who has confidence in his/her physician and knows that the information he/she gives will not be passed on to third parties is more likely to reveal all the facts and tell the absolute truth, so that the physician can make an optimal diagnosis of his/her case.
According to the rules of the physician-paticnt relationship, the physician primarily has a duty and responsibility to inform his/her patient on his/her health status. In the second stage the physician and patient should decide jointly whether to pass the information obtained to a third party or not. It is only in a very narrowly defined number of cases that a physician is allowed to inform a third party without first asking the patient concerned for his/her permission.
It follows from the above that a physician who works as an intermediary between a patient and, for example, an employer in case of a pre-employment examination has primarily a responsibility towards his/her patient. As soon as there is an (implicit) treatment agreement between the physician and the patient, the employer will become the third party. The rules of confidentiality derived from the right to privacy prescribe that the physician should first of all inform the patient about the results of the examination. Unless agreement is reached to act differently, the patient remains entitled to refuse to permit the passing on of the test results to the employer, who is the third party.
States have a general duty to secure respect for these rules in vertical relations. It is unacceptable that the use of advanced medical examination techniques, particularly in a non-medical setting, should become a new selection criterion to exclude large numbers of people.