HIV/AIDS – Legal aspects
Dr. André Pereira Coimbra – Portugal
Centre for Biomedical Law – Faculty of Law – University of Coimbra
andreper@fd.uc.pt
I - The Right to Health as a Human Right
1. International level
The right to health is established in several international documents, including
the Universal Declaration of Human Rights from 1948 (art.25)1 and the
International Covenant on Economic, Social and Cultural Rights (art. 12).2
2. European Level
At the European level I will point out – among many other documents already
discussed and distributed in this Conference - the Charter of Fundamental Rights of
the European Union (2000) (art. 35).3
The Council of Europe4 has approved the European Convention on Human
Rights and Biomedicine (Oviedo, 1997). Given the importance of this Convention at
the European level in the field of Patient’s Rights, I will explain shortly its content.
2.1. General Aspects about the Convention on Human Rights and
Biomedicine
The Convention on Human Rights and Biomedicine entered into force on
December 1st 1999. Many European Countries have already ratified it.
1
Universal Declaration of Human Rights - Article 25. – “(1) Everyone has the right to a standard
of living adequate for the health and well-being of himself and of his family, including food, clothing,
housing and medical care and necessary social services, and the right to security in the event of
unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances
beyond his control. (2) Motherhood and childhood are entitled to special care and assistance. All children,
whether born in or out of wedlock, shall enjoy the same social protection.
2
International Covenant on Economic, Social and Cultural Rights - Article 12: “1. The States
Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable
standard of physical and mental health. 2. The steps to be taken by the States Parties to the present
Covenant to achieve the full realization of this right shall include those necessary for: (a) The provision
for the reduction of the stillbirth-rate and of infant mortality and for the healthy development of the child;
(b) The improvement of all aspects of environmental and industrial hygiene; (c) The prevention, treatment
and control of epidemic, endemic, occupational and other diseases; (d) The creation of conditions which
would assure to all medical service and medical attention in the event of sickness.”
3
Charter of Fundamental Rights of the European Union (2000) - Article 35 Health Care “Everyone has the right of access to preventive care and the right to benefit from medical treatment under
the conditions established by national laws and practices. A high level of human health protection shall be
ensured in the definition and implementation of all Union policies and activities.”
4
A political organisation set up in 1949, the Council of Europe promotes democracy and human
rights continent-wide. It also develops common responses to social, cultural and legal challenges in its
more than 40 member States.
The Convention on Human Rights and Biomedicine is the first internationally
binding legal text designed to protect people against the misuse of biological and
medical advances. It aims at preserving human dignity and identity, rights and
freedoms, through a series of principles and rules.
It sets out a great number of major principles and rules which signatory states
must recognise and incorporate into their domestic law. The Convention does not
however prevent a state from giving greater protection vis-à-vis the applications of
biology and medicine.
These principles concern the individual, the community and the human species.
The text stipulates from the outset that the interest and well being of humans must take
precedence over the interest of society or science.
Its main points concern are:
Genetics: Bans discrimination on the grounds of a person's genetic make-up and
allows the carrying out of predictive genetic tests only for medical purposes. Allows
genetic engineering only for preventive, diagnostic or therapeutic reasons and only
where it does not aim to change the genetic make-up of a person's descendants.
Bans use of in-vitro fertilisation to help choose the sex of a child, except where
it would avoid a serious hereditary condition.
Medical research: Regulates medical research according to detailed and precise
conditions, especially for people who cannot give their consent.
Prohibits creation of human embryos for research purposes and requires
adequate protection of embryos where countries allow in-vitro research.
Profit: Prohibits financial gain from the use of any part of the human body.
Consent: Requires informed consent, in advance, except in emergencies.
Consent can be withdrawn at any time.
Requires treatment to be of direct benefit to those unable to give their consent,
such as children and people with mental illnesses.
Rights to private life and information: Sets out patient's right to be informed
about their health, including the results of predictive genetic tests. The right not to know
is also recognised.
Organ transplants: Bans removal of organs and other tissues, which cannot be
regenerated from people not able to give consent. The only exception is for regenerative
tissue (especially bone marrow) between siblings.
This Convention has gained importance during the years. So far 17 States
ratified it and 14 have given its signature not (yet) followed by ratification.
2.2. European Convention on Human Rights and Biomedicine: its
importance in Portugal
Portugal ratified the European Convention on Human Rights and Biomedicine
and its additional Protocol (on the prohibition of human cloning) in the beginning of
20015; these documents entered into force the 1-12-2001.
This ratification is considered to be of great importance for our health law,
because, for the first time, some important aspects are more specifically regulated, v.g.,
the value of professional standards (art. 4), the previously expressed wishes (art. 9), the
right not to know (art.10, 2), the juridical implications of genome knowledge (Chapter
IV), research on embryos (art.18), and the utilisation of part of the human body
5
President’s Decree no 1/2001, DR no 2, Iª Série-A, 3rd January and Parliament’s Resolution no
1/2001, DR no 2, Iª Série-A 3rd January. Portugal also signed the Additional Protocol to the Convention
on Human Rights and Biomedicine, on Transplantation of Organs and Tissues of Human Origin on
21/2/2002.
(Chapter VII). On the other hand, some particular norms are not in accordance with our
legal system.6
2.3. Equitable access to health care (Article 3 of The ECHRBio)
I would like to stretch the importance of Art. 3 of the Biomedicine Convention,
according to which: “Parties, taking into account health needs and available resources,
shall take appropriate measures with a view to providing, within their jurisdiction,
equitable access to health care of appropriate quality.”
This rule is of paramount importance in the field of AIDS, since this illness has
increased significantly the National Health Services costs and thus education and
prevention are essential. This leads us also to the Principle of Justice in Bioethics
(Beauchamp/Childress).
3. Portuguese Law
The Portuguese Constitution provides a Section with Social Rights (SECTION
III-Economic, social and cultural rights and duties). CHAPTER II rules Social rights
and duties.7 Here is included the right to health (Article 64).8
Article 64º, nº1 of the Constitution states that all have the right to the protection
of health and the duty to defend and promote it. Though it is part of the catalogue of
second generation rights, emphasis is generally put on the fact that the right to health is
an “advanced guard” of the right to life and the right to physical and mental integrity and
it integrates, paralleling the right to housing, the category of “subsistence rights”. Nº 2 of
See André Pereira, “Portuguese Country Report”, in Taupitz, Jochen (Ed.), The Convention on
Human Rights and Biomedicine of the Council of Europe: a Suitable Model for a World-Wide Regulation?, Berlin,
Heidelberg, [etc.], Springer, 2002, pp. 705-738.
7
Portuguese Constitution - Article 63 - Social security and solidarity: 1. Everyone is entitled to
social security. 2. It is the duty of the State to organise, co-ordinate and subsidise a unified and
decentralised social security system, with the participation of the trade unions and other associations
representing workers and associations representing other beneficiaries. 3. The social security system
provides protection for citizens in sickness or old age or when disabled, widowed, orphaned or
unemployed, and in all other situations in which the means of subsistence or the capacity to work have
been lost or impaired. 4. All periods in work, no matter in which sectors of activity that work was
performed, are taken into account in calculating the amount of old age and disability pensions, as
determined by the law. 5. The State shall support and supervise, as set laid down by law, the activity and
functioning of private institutions of social solidarity and other non-profit institutions of recognised
public interest that pursue the objectives of social security contained in this Article, Article 67(2)(b),
Article 69, Article 70(1)(e) and Articles 71 and 72.
8
Art. 64- Health: 1. Everyone has the right to have his or her health safeguarded and the duty to
defend and foster it. 2. The right to the safeguarding of health shall be met by: a. A national health service
available to all and free of charge to the extent that the economic and social conditions of citizens require;
b. The creation of economic, social, cultural and environmental conditions that guarantee, specifically, the
protection of children, the young and the old; the systematic improvement of living and working
conditions; the promotion of physical fitness and sports in schools and among the people; the
development of health education for the people and practices of healthy living. 3. In order to ensure the
right to the safeguarding of health, the State has a primary duty: a. To guarantee the access of all citizens,
regardless of their economic circumstances, to both preventive and remedial medical care and
rehabilitation; b. To guarantee a rational and efficient coverage of health human resources and units
throughout the whole country; c. To direct its programme towards the provision of the costs of medical
care and medicines from public funds; d. To regulate and supervise privately funded medical practice,
coordinating it with the national health service so as to ensure that adequate standards of efficiency and
quality are achieved in public and private health institutions. e. To regulate and supervise the production,
distribution and marketing and the use of chemical, biological and pharmaceutical products and other
methods of treatment and diagnosis. f. To establish policies for the prevention and treatment of drug
abuse. 4. The national health service shall have a decentralised management in which the beneficiaries
participate.
6
the same article states that the right to the protection of health is realised through a
National Health Service, universal, general and predominantly free. Nº 3 sets out the
priority tasks incumbent upon the State in order to ensure this right: guaranteeing the
access of all citizens to all types of health care, irrespectively of their economic
condition, guarantee a rational and equitable geographical distribution of health care
services, to discipline and monitor the private provision of health care services, to
discipline and control the production, distribution and trade of medicine and to set out
prevention and treatment policies in the field of drugs.
4. The Portuguese situation
4.1. General overview of Portuguese health-care system
Public expenses (National Health Service and other public sub-systems)
represent 6% of the GNP in 2001.9
Portugal has a universal general and (tendencially free) National Health Service,
since 1979 (Beveridge model), which funding comes from the national budget10. There
are also other sub-systems that provide health care to 25% of the population (the civil
servants scheme (14%), bank employees scheme (5%), armed forces scheme (2,5%),
post employees, and others); topping-up health insurance is used in partial coverage by
5% of the population11. However private medicine and private investment in medicine is
one of the greatest in the OECD - in 1996, private expenses were 3,4% of the GNP.12
In our country there are important inequalities among regions and socialeconomic condition.13 Anyway, access and use of health care is, nowadays, guaranteed.
There is a broad supply of Hospitals, Health centres and pharmacies, the main problem
being the organization of primary health care services (GP, Family Doctor) and the
‘waiting lists’ for chirurgic interventions.14 However, the Portuguese population reveals
a high level of satisfaction with the public health care. In 12 years the use of health care
services increased 22% and that happened in all age groups.15
The last decades and years one observe great improvement in the health of
Portuguese people. That is especially notorious in the area of contagious diseases (tosse
convulsa, poliomielite, tetanous and difteria); the reduction of the mortality rate for
cronical - degenerative diseases; in the field of natal, children and women’s health. The
9
See OBSERVATÓRIO PORTUGUÊS DOS SISTEMAS DE SAÚDE, O Estado da saúde e a
Saúde do Estado, Relatório de Primavera – 2002, Lisboa, Escola Nacional de Saúde Pública, 2002, p. 38.
10
Art. 64 Portuguese Constitution.
11
CORREIA DE CAMPOS, Yellow light at the crossroads: wait for green or cross the yellow –
uncertaities about the future of the portuguese NHS, Associação Portuguesa de Economia da Saúde,
Documento de Trabalho 3/96, Lisboa, 1996, p. 6. However, with the exception of the civil servants
scheme, none of the others is technically self-sustainable, relying on the NHS for higher levels of care.
12
SIMÕES/ LOURENÇO, “As Políticas Públicas de Saúde em Portugal nos Últimos 25 anos”,
in BARROS/ SIMÕES (Orgs.), Livro de Homenagem a Augusto Mantas, Lisboa, 1999, p.127. In 1996
the global costs of health care represent 8,2% GDP, being 40,24% private and 59,76% public expenses.
13
See OBSERVATÓRIO PORTUGUÊS DOS SISTEMAS DE SAÚDE, O Estado da saúde e a
Saúde do Estado, Relatório de Primavera – 2002, Lisboa, 2002, p. 24.
14
In 1998 there were 3,7 nurses for 1000 inhabitants (in Europe 5,9). The rate of doctors is
within European standards.
15
Portuguese people take, in average, 15 minutes to go to the health centre by foot (45%), 25
minutes to arrive to the nearest hospital (64,1%) using their own car or a relative’s or a friend’s car; and
10 minutes to go to the nearest pharmacy; 83,7% of the Portuguese citizens have a Family Doctor in their
closest health centre. See VILLAVERDE CABRAL, Saúde e doença em Portugal, 2002. See also
OBSERVATÓRIO PORTUGUÊS DOS SISTEMAS DE SAÚDE, O Estado da saúde e a Saúde do
Estado, Relatório de Primavera – 2002, p. 25.
improvements are less important in the areas of behavioural attitudes towards health:
traffic accidents and AIDS.16
4.2. High percentage of HIV infections
In Portugal, AIDS epidemics are still growing. According to AIDS-UNO there
are around 50.000 HIV-infected persons; there are only 22.000 notified carriers by the
Infectious Disease Epidemiological Surveillance Centre, being 89% of this citizens
between 15 to 45 years old.
Unfortunately Portugal has the highest rate of HIV carriers in the European Union
and is the 6th among all European countries. The situation is severe and demands urgent
action.
4.3. Tuberculosis – The legal situation and case law
Tuberculosis is becoming a public health problem in Portugal, especially among
drug addicts and people suffering from AIDS. There is not a recent Act dealing with
this subject. Thus the Doctors and the Courts have some difficulties in promoting a
compulsory treatment.
Obviously, informed consent of the person shall always be the rule, however in
some cases, when there is an actual danger for third persons and or the public health,
compulsory treatment should be accepted.
The Sentence of the Oporto’s Court of Appeal, of 6 February 2002,17 decided the
compulsory internment of a citizen carrier of tuberculosis. This citizen refused to follow
the treatment and he was creating a concrete danger of contagion of third persons, his
relatives and co-habitants and was a danger to public health.
Law no 2036, of 9-8-1949, states that tuberculosis is a contagious disease and
determines that the General Health Direction shall determine compulsory internment of
the patient.18 This solution seems to be in accordance with Art. 5, 1, e) ECHR. Also Art.
26, 1 of the Biomedicine Convention allows restriction to the informed consent
principle, if it is “necessary in a democratic society … for the protection of public health
or for the protection of the rights and freedoms of others”.
However, Law no 2.036 is unconstitutional in what the process of internment
concerns. It shall not be a competence of the Health authority to determine the
compulsory internment or treatment; that shall be reserved to the Courts (Art. 27º, 3, h)
16
See OBSERVATÓRIO PORTUGUÊS DOS SISTEMAS DE SAÚDE, O Estado da saúde e a
Saúde do Estado, Relatório de Primavera – 2002, pp. 22-23. See also www.observaport.org.
CORREIA DE CAMPOS, Yellow light at the crossroads, cit., p. 1: “During the last 15 years, the
health situation of Portuguese population improved steadily. Life expectancy at birth (LEB), infant
mortality (IMR) and maternal morbidity (MMR) rates witnessed the evolution. In almost all causes of
death the gap between Portugal and other European neighbours was reduced, with exceptions of deaths
attributable to cardiovascular diseases and accidents. Some of the observed improvements may be due to
the action of the NHS, created in 1979. (…) Equity in outcomes, as measured by the decline of the ratio
of districts with extreme values in standardized death rates (SDR), IMR, MMR and perinatal mortality
rates (PMR) came down between the early 70s and the early 80s. During the 80s and 90s the NHS
showed signals of structural rigidity, with increased inefficiencies, decline in the quality of care, and in
consumer –provider satisfaction; a slight increase in inequalities in the use and service expenditure by
social class was also registered.”
17
CJ, 2002, I, 232-233.
18
Law no 48/90, of 24th August, (Base XIX, no 3) also prescribes: the health authorities shall
beggin the process, according to the Constitution and the law, of compulsory internment or treatment of
individuals, who endanger public health.
of the Portuguese Constitution).19 And the Public Prosecutor shall promote the
necessary steps towards that decision according to DL no 547/76, of 10-7, and Law no
36/98, of 24-7 (Mental Health Act).
II – HIV/AIDS and Family Law
a. Marriage of a HIV carrier
It would be unconstitutional to prohibit someone to get married just because
he/she carries HIV or suffers form AIDS. The Charter of Fundamental Rights of the
European Union and the Portuguese Constitution protects the right to marry and to
found a family.20 Such a limitation would be unacceptable since that would serve no
protected interest. A public health interest or the rights of third persons to physical
integrity can be protected through education and the so-called ‘safe sex’.
On the other hand, procreation is not the scope of marriage, even for the recent
(1982) version of the Canonical Code. Moreover, nowadays there are some scientific
techniques of medically assisted procreation that allow a HIV carrier to have children
without transmitting the disease.
b. Pre-marriage compulsory examination
Marriage is a long-lasting arrangement with sexual implications for the partners
and, usually, procreation. Not surprisingly, therefore, some lawmakers have attempted
to use marriage to implement certain policies. In some national laws premarital health
controls exist to prevent contagious diseases.
Portuguese Law, it would appear, would not permit such premarital medical
controls. The 1976 Constitution’s principle, which set out the freedom to marry in
conditions of full equality (article 36.1) leads us to the conclusion that obstacles to
marriage may only be justified on grounds of clear public interest.
19
Article 27 - Right to liberty and security: 1. Everyone has the right to liberty and security. 2.
No one shall be deprived of his or her liberty, in whole or in part, unless as the consequence of a sentence
of imprisonment imposed by a court convicting him or her of an offence punishable by law, or as the
consequence of a security measure judicially ordered. 3. This guarantee does not apply to the following
cases where a person is deprived of his or her liberty, for a period and under conditions laid down by law:
a. Detention in flagrante delicto; b. Detention or remand in custody where there is strong evidence that the
person has committed a serious crime punishable by imprisonment for more than 3 years; c. Arrest,
detention or other coercive measure subject to judicial control of a person who has unlawfully entered or
remained in the national territory or against whom extradition or deportation proceedings have been
instituted; d. Imprisonment for reasons of discipline of military personnel, to whom a right to appeal to
the competent court is guaranteed; e. Detention of a minor in an appropriate institution for the purposes of
protection, support or education, on the order of a competent court of law; f. Detention under a court
order for non-compliance with a court order or to ensure appearance before the competent judicial
authority. g. Detention of suspects for identification purposes, in such cases and periods of time as are
strictly necessary. h. Internment of a person suffering from a psychiatric disorder in an appropriate
therapeutic establishment, ordered or confirmed by a competent judicial authority. 4. Everyone who is
deprived of liberty shall be informed, promptly and in a manner that he or she understands, of the reasons
for the arrest or detention, and of his or her rights. 5. Any deprivation of liberty in violation of the
provisions of this Constitution or the law shall place the State under the duty to compensate the person
aggrieved as laid down by law.
20
Portuguese Constitution - Article 36 – “1. Everyone has the right to found a family and to
marry on terms of full equality.”
Given the fact that engagement in sexual activities is not dependent on
marriage21 it seems not to be efficient to demand a premarital test; moreover it would
not pass the proportionality test.22 The State should better increase the education
campaigns. More prevention campaigns aiming at changing behavioural patterns in
relation to sexuality are required.
c. Duties of a HIV carrier spouse
A HIV carrier has some legal duties towards his/her spouse or partner. His
condition of suffering an infectious disease creates him the obligation to disclose this
information and not to harm the spouse by infecting him/her. On the other hand the
healthy spouse has the duty of assistance.
III - HIV/AIDS and Contract Law
a) Fundamental Rights and Private Law
Fundamental Rights is no longer a public law issue. Moreover, it is nowadays
accepted that Human rights or Fundamental Rights shall be applied in the field of
private law. This has been so in Continental law (see the German Constitutional Court
case law, the Portuguese Constitution23, and so on) but also in Common Law (see the
Human Rights Act 1998).
Thus the principle of non-discrimination shall be ensued in the field of contract
law. With this background in mind I would like to make reference to Draft-law 385/IX
– prohibits discrimination against HIV/ AIDS and chronicle disease carriers – that is
pending in Portuguese Parliament.
This draft-law prohibits any kind of negative discrimination against HIV/AIDS
and chronic disease carriers. It provides special protection on the field of labour
contract, goods and services providers, lease contract, insurance contract, and public
places or places open to the public access, including schools, and others.
b) Insurance contract and non-discrimination of HIV carriers
21
Portuguese law already offers some protection to non-married couples. Law 7/2001, of 11th
May, gives some legal protection to heterosexual, as well as homosexual partnerships, for people who
have been living together, sharing “table, bed and roof”, for more than 2 years. There is no need, neither
the possibility, to register the partnership. The main protection is in the field of tax law, labour law, social
security law, but also civil law, v.g., rent law and protection of the family home, in case of death or
separation. But there is no protection in the field of succession law. See PEREIRA COELHO/
GUILHERME DE OLIVEIRA, Curso de Direito da Família2, Coimbra, Coimbra Editora, 2001, pp. 83 f.
Law 6/2001, of May 11th, protects those who share a home and a domestic economy but do not
necessarily have sexual relations: mere friends or homosexuals who do not wish to overtly publicise their
relation. There are fewer legal effects than in the previous situation.
22
Portuguese Constitution Article 18 - Legal application: “1. The constitutional provisions
relating to rights, freedoms and guarantees shall be directly applicable to, and binding on, both public and
private bodies. 2. Rights, freedoms and guarantees may be restricted by law in only those cases expressly
provided for in this Constitution; restrictions shall be limited to the extent necessary to safeguard other
rights or interests protected by this Constitution. 3. Laws restricting rights, freedoms and guarantees shall
be general and abstract in character, shall not have retroactive effect and shall not limit, in extent or
scope, the essential content of the constitutional provisions.”
23
Portuguese Constitution - Article 13 - Principle of equality 1. All citizens have the same social
rank and are equal before the law. 2. No one shall be privileged or favoured, or discriminated against, or
deprived of any right or exempted from any duty, by reason of his or her ancestry, sex, race, language,
territory of origin, religion, political or ideological convictions, education, economic situation or social
circumstances.
This draft-law prescribes that he Government shall regulate credit-market in
respect to buying a house. In fact, for the purposes of obtaining a mortgage, banks
usually require a life insurance policy. Insurance companies, for their part, demand
clinical tests (including HIV test) to be carried out before underwriting the contract. In
this context, the Ombudsman had, already in 2000, made a recommendation to the
Minister of Finance24. Indeed, individuals testing positive for HIV have been most
subject to discrimination in Portugal, which violates Recommendation nº R(89) 14, of
24 October 1989 by the Council of Ministers of the Council of Europe. Moreover, a
Committee against HIV/AIDS and chronicle disease carriers discrimination should be
established.
IV – HIV/AIDS and Labour Law
a) Health information disclosure in the workplace
Compulsory examinations shall only be accepted for very serious reasons of
public health or for protecting third parties. Non-consensual intervention may offend the
human dignity and shall be exceptional. Indeed, informed consent is the rule in the
European legal systems (see Art. 3 Charter of the Fundamental Rights of the European
Union25 and Art. 5 Biomedicine Convention26).27
Accordingly compulsory communication of private information is also against
the right to privacy and self-determination of health information, which are both based
24
Recommendation nº 4/B/00 by the Ombudsman, www.provedor-jus.pt The Ombudsman does
not call into question “the need to establish conditions and limits involving the insurances operations so
as to safeguard the companies”, bearing in mind the stability of the insurance sector. The suggested
course is that of “the legal creation of a public fund to guarantee situations regarded by insurance
companies as being high risk”, which they would normally reject. This Fund could be activated
subsidiary against real established guarantees.
25
Article 3 - Right to the integrity of the person: Everyone has the right to respect for his or her
physical or mental integrity. In the fields of medicine and biology, the following must be respected in
particular: - the free and informed consent of the person concerned (…).
26
Article 5 - An intervention in the health field may only be carried out after the person
concerned has given free and informed consent to it. This person shall beforehand be given appropriate
information as to the purpose and nature of the intervention as well as on its consequences and risks. The
person concerned may freely withdraw consent at any time.
27
The principle of informed consent is to be found in the Portuguese Constitution. Article 25 Right to personal integrity: 1. The moral and physical integrity of the person is inviolable. 2. No one shall
be subjected to torture or to cruel, degrading or inhuman treatment or punishment. Article 26 - Other
personal rights: 1. Everyone is recognised as having the right to his or her personal identity, personality
development, civil capacity, citizenship, good name and reputation, and likeness, the right to speak out
and the right to the protection of the privacy of his or her personal and family life and to legal protection
against any form of discrimination. 2. The law shall establish effective guarantees against the misuse, or
use that is contrary to human dignity, of information concerning individuals or families. 3. The law shall
guarantee the personal dignity and genetic identity of the human being, particularly in the creation,
development and use of technology and in scientific experimentation. 4. A person may be deprived of
citizenship or subjected to restrictions on his or her civil capacity only in the cases and under the
conditions laid down by law, and never on political grounds.
in the principle of human dignity, which is the main principle Portuguese Constitution28
and is also paramount is the Biomedicine convention29.
Another right that is at stake is the right not to know.
According to Art. 10 European Convention on Human Rights and Biomedicine:
“(2) Everyone is entitled to know any information collected about his r her health.
However, the wishes of individuals not to be informed shall be observed.
HIV/AIDS is one of the situations where the right not to know I most discussed.
In fact, Art. 10, 3 Bioedicine Convention limits this right, establishing: “In exceptional
cases, restrictions may be placed by law on the exercise of the rights contained in
paragraph 2 in he interests of the patient.” Moreover, Art. 26 of the Biomedicine
Convention accepts that: “In order to protect the rights of a third party or of society the
right not to know may be restricted.” This means, according to the Explanatory Report:
“Certain facts concerning the health of a person who has expressed a wish not to be told
about them may be of special interest to a third party, as in case of a disease or a
particular condition transmissible to others.”
b) Portuguese Labour Code (2003)
Art. 15 ff. New Labour Code regulates personality rights (e.g., freedom of
speech and opinion, privacy, data protection). Art 18 protects right to respect for
physical and mental integrity of the worker and Art. 19 forbids, as general rule, medical
examinations in the working place not regulated by law, except if those are necessary
for protection of third parties or the worker herself. Pregnancy tests are absolutely
forbidden.
Art. 22 ff. provide rules against discrimination of any kind, notably on the
grounds of genetic inheritance, reduced labour force, handicap, and chronicle illness.
Law No.134/99 August 28th prohibits discrimination in the exercise of rights on the
grounds of race, colour, nationality or ethnic origin. The New Labour Code
complements this legislation, establishing rules against negative discrimination in the
working place. It is considered that Directive 2000/43/EC and Directive 2000/78/CE are
already implemented into national law.
AIDS is nowadays considered as a chronicle disease. If well medicated, one can
survive for several years (10-20), and keep working and being an active member of the
society for many years. The risk of contagion only exists in very sensitive and intimate
conditions, thus in most of the works there is no grounds for discriminating these
citizens.
If the worker has been discriminated he might complain to a public body for
punishment of the employer as well as in tort. He may also sue the employer to demand
reparation, including being reintegrated in the enterprise or being accepted in a given
job. Therefore, it is very important to point out the inversion of the burden of the proof
hat is established by the Directive (Art. 10): that is: the employer must prove that the
plaintiff was not chosen for a job, or was not promoted or has fired not because he was a
28
Article 1 Portuguese Republic: Portugal is a sovereign Republic, that is based upon the dignity
of the human person and the will of the people and is committed to building a free and just society united
in its common purposes.”
Other European Constitutions protect the dignity of the human being; see for example: Germany,
Spain and Greece.
29
Article 1 – Purpose and object: “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. Each
Party shall take in its internal law the necessary measures to give effect to the provisions of this
Convention.”
HIV carrier, but for an objective-professional reason. At least in Portugal, we do
interpret the Labour Code provisions that prevent discrimination o persons suffering
from chronicle illness in such a way as to include HIV/AIDS.
b) Constitutional Court Case Law
Constitucional Court Decision no 368/02 (25 September) affirms that a
worker or a candidate to work may be obliged to submit himself to heath care
examinations, “which are necessary and adequate – taking into account the nature and
the kind of work – that he/she is not a danger for third persons, for example, to
minimize the danger of a labour accidents that may cause harm to other workers or to
other people or to avoid contagion of other workers or third persons.” That is, the
Constitutional Court does not prohibit these examinations, but restricts them to the
minimum necessary. Since AIDS infection is difficult in the workplace, only in very
few professions would it be acceptable to oblige to worker to do an AIDS test.
Constitucional Court Decision no 306/03 prescribed that the employer shall
not have access to health information of the employee. Only a Doctor shall have that
information. After the medical examination the physician himself shall give a positive
or negative medical information, without disclosing concrete information of the
candidate.
In colclusion, following this jurisprudence HIV/AIDS may only rarely be a
legitimate reason to negatively discriminate someone at work.
V - HIV/AIDS and Criminal Liability
a) Criminal liability of a HIV carrier
According to Portuguese criminal law, a HIV carrier who infects another person
(often through intercourse or drug addicts who share a syringe) may be responsible for
murder, manslaughter, battery or dissmination of contagious diseases. However, in
practice it is very difficult to establish causation beyond any reasonable doubt.30 Some
Authors argue that even punishment for attempt is difficult since the intention is not
clearly established.31
Some Authors defend the idea of creating another crime, which would make it
easier to punish those who try to disseminate the illness, even if they only act with
recklessness. Such a crime would punish those who, knowing they are HIV carriers,
engage in sexual relations or other activities (such as sharing syringes) without
acknowledging the partner of that fact.
b) Assumption of a risk by the victim
Some German and Portuguese Authors consider that if one is aware of the illness
of the partner but accepts to engage in activities that may infect him/her, than he/ she
accepted that risk, and the HIV carrier shall not be punished, even if the other was
infected. This doctrine has its foundations on the general theory of assumption of a risk,
and the principles of autonomy and responsibility of the citizen.
30
Scientific development may permit in the future to establish the causal link without any doubt,
if it an be proven though genetic analysis that the virus of A (the tortfeasor) corresponds to the one form
B (the victim).
31
See COSTA ANDRADE, Comentário Conimbricense ao Código Penal, Coimbra, 1999, 280.
Attempt is only punishable when there is intention (dolus), according to Art. 22 Penal Code.
VI - HIV/AIDS and Confidentiality
a) Medical Confidentiality – interests at stake
The Right to privacy of information in the health field is established in several
European documents: Art. 8 of the European Convention on Human Rights; Article 6 of
the Convention for the Protection of Individuals with regard to Automatic Processing of
Personal Data; Article 7 of the Charter of Fundamental Rights of the European Union
and Art. 10 of the European Convention on Human Rights and Biomedicine32
In Portugal, Article 26º, nº 1 of the Constitution establishes the protection of
private and family life and number 2 of the same article states that legislation will set
forth adequate guarantees against the abusive use or a use contrary to human dignity of
information regarding persons and families.
In Civil law, article 80º of the Civil Code also mirrors the two traditional
dimensions of this right, designed both as to bar others from interfering with private life
and to prohibit the diffusion of information about private and family life. Articles 75º to
78º of the Civil Code, referring to professional secrecy and the protection of
correspondence, are also a development relevant in this field, as their violation triggers
civil responsibility and the correspondent duty to compensate, in pecuniary and moral
terms, the victim.
In Criminal Law, Chapter VII of the Criminal Code applies: article 196º,
punishes violation of the respect for the home, article 197º punishes violation of the
respect for private life33, criminalizing, not only the diffusion of images, conversations,
etc. but also the mere fact of registering them or taking the person into picture. In the
case of diffusion of facts relating to private life, the conduct, though, shall not be
punished if it was the sole adequate means to fulfil a legitimate and relevant public
interest. Article 194º also punishes violation of the home and correspondence. To be
noted is that our criminal law protects privacy, independently of honour: crimes affecting
this other right are contemplated in Chapter VI of the criminal code.34 Here, an admitted
defence is the so called exceptio veritatis, that means the accused may prove he was
telling the truth.
Medical confidentiality serves both the privacy interest of the patient and the
public interest of confidence in medicine. There is, thus, a public health policy behind
medical confidentiality.
“The crucial dilemma here is whether relaxation of the confidentiality rule would
lead to failure to seek advice and treatment and hence to the spread of the disease, or
whether the imposition of absolute secrecy improperly denies others the opportunity to
avoid the risk of exposure to infection.”35
b) Information disclosure in case of contamination risk of the spouse
32
“Everyone has the right to respect for private life in relation to information about his or her
health.”
33
Criminal law doctrine accepts the dreistufentheorie, distinguishing between a sphere of
intimacy, a sphere of privacy and a public sphere. The concept of public persons or Zeitgeschichteperson
has also been resorted to and is accepted and applied by courts: see, on this, COSTA ANDRADE,
Liberdade de Imprensa e Inviolabilidade Pessoal, Coimbra 1996.
34
It includes both an offense to the honour in the presence of the offended or in his absence, in
articles 180º and 181º. FIGUEIREDO DIAS, “Direito da Informação e Tutela da Honra no Direito Penal
da Imprensa Português”; Revista de Legislação e Jurisprudência, ano 115º, 1982783, pp. 100 e ss.
35
Mason & McCall Smith, Law and Medical Ethics5, Butterworths, London, Edimburgh, Dublin,
1999, 198.
Discussion has emerged on whether it would be a breach of such right the
conduct of a doctor who reveals to his patients’ husband or wife the fact that the former
is a carrier of HIV. In spite of the fact that doctors would be, normally, under the duty to
keep professional secrecy, the importance of the right to physical integrity, ultimately,
the protection of the right to life of the husband or wife, should authorise – according to
the National Committee of Ethics for Life Sciences 36- a limitation to this duty and should
not be seen as a unlawful violation of the right to privacy.
In fact the right to life or the right to physical integrity of the spouse are
endangered by the other, who unlawfully does not disclose the relevant information.
After trying to convince the HIV carrier, the physician is allowed to breach the duty of
confidentiality and reveal it to the spouse.
Even more difficult is the case when the physician is the doctor of both husband
and wife. According to Portuguese law, the doctor is responsible for their health; that
means he shall take all necessary actions in order to protect each of them from illness. A
German Court already condemned a Doctor for not disclosing information to the spouse
of a HIV carrier who eventually infected her.
The breach of confidentiality shall, nevertheless, be exceptional. We may
conclude, “Any departure from the strictest anonymity in respect of HIV-related
information must be subject to intense scrutiny.”37
36
37
Opinion 32/CNECV/2000.
Mason & McCall Smith, Law and Medical Ethics5, 199.