sábado, outubro 25, 2008

Congresso Mundial de Direito Médico em Pequim


Apresentei no 17.º Congresso Mundial de Direito Médico (Pequim, 17 a 21 de Outubro) a seguinte conferência:


HIV/AIDS AND DISCRIMINATION IN THE WORKPLACE: THE COOK AND THE SURGEON LIVING WITH HIV

AIDS, Stigma and discrimination
From the moment scientists identified HIV and AIDS, social responses of fear, denial, stigma and discrimination have accompanied the epidemic. Discrimination has spread rapidly, fuelling anxiety and prejudice against the groups most affected, as well as those living with HIV or AIDS. However, People Living With HIV (PLWHIV) have equal capacity to work and to be an active member of society during many years and even decades. Thus, unfair discrimination shall not be accepted.
HIV is a burden to the person and to society. 90% of people living with HIV (PLWHIV) are in the economically productive period of their lives, and more than 50% of the infected population has between 15 and 45 years of age.[1] Therefore, the labour place and labour law have a key role in the struggle against HIV and the negative effect of this infection. AIDS is an issue relevant for enterprise management and combating stigma and discrimination of PLWHIV is a major human rights issue. The strategy to avoid stigma and discrimination is the implementation of a contamination risk reduction strategy and the education against discrimination. The explanation of the real risks of contamination allows a better integration of PLWHIV. Moreover, testing for HIV at the workplace should be voluntary and confidential, and should never be used to screen job applicants or workers. This is also the policy proposed by the Joint ILO/ WHO Guidelines on Health Services and HIV/AIDS (World Health Organization/ lnternational Labour Organisation (2005).[2]

International and European legislation to combat stigma and discrimination
Human rights apply to HIV and we dispose of very valuable tools such as the International Guidelines on HIV/AIDS and Human Rights (2006 Consolidated Version),[3] and the Handbook for Legislators on HIV/AIDS, Law and Human Rights.[4] By the same token, fighting AIDS is one of the most important tasks in accomplishing the goals of Article 12 International Covenant on Economic Social and Civic Rights.[5] Also important for PLWHIV is the United Nations Convention on the Rights of Persons with Disabilities, which entered into force on the 4th April 2008. Combat stigma and discrimination of people living with HIV/AIDS is also one of the purposes enunciated by the Dublin Declaration on Partnership To Fight HIV/AIDS in Europe and Central Asia.
The Council of Europe[6] and the European Union have enacted important documents to protect PLWHIV. There is anti-discrimination law at the European Union level, covering for example sexual orientation, disability and gender, but it does not explicitly address HIV status. Whilst some national legislative systems have stated that HIV positive status should from the moment of diagnosis be considered a disability (see for example United Kingdom Disability Discrimination Act 2005 and the Portuguese Law no. 46/2006, of 28 August),[7] and thus be covered by discrimination law, there is no EU requirement for such a provision. Furthermore, EU protection from discrimination on grounds of disability does not extend as yet to the provision of goods and services.[8] Discrimination in the workplace is forbidden on all ‘grounds’ (ethnic origin, age, gender, disability and sexual orientation). It has been forbidden in respect of gender since 1976. Discrimination in the field of goods and services is only forbidden on grounds of ethnic origin and, since 2004, gender (i.e. not disability or sexual orientation). For education and social protection, protection against discrimination is limited to ethnic origin. In other words, EU anti-discrimination legislation is very inconsistent, with the political emphasis on racism.[9]

Portuguese law: Informed Consent and Confidentiality.
Informed consent is the rule in the European legal systems (see Art. 3 Charter of the Fundamental Rights of the European Union and Art. 5 Biomedicine Convention on Human Rights and Biomedicine that was ratified by Portugal in 2001). Accordingly compulsory examinations or compulsory communication of private information are against the right to physical and moral integrity (Art. 25 Portuguese Constitution), the right to intimacy of private life (Art. 26) and the right to self-determination of health information (Art. 35), which are based in the principle of human dignity, which is the main principle Portuguese Constitution[10] and is also essential for the Biomedicine Convention.[11] In order to perform HIV test there is the need to obtain informed consent.[12] Moreover, access to health information must be limited according to principle of proportionality to cases where the protection of the worker or third parties so demand.[13] Therefore, the Labour Code of 2003 (Art. 19) only accepts medical examinations of workers or candidates of work in some extraordinary circumstances. According to Article 7 of Data Protection Act, health information is sensitive data.[14] The role of labour doctors is crucial in keeping confidentiality and establishing with fairness and based in scientific evidence the ability (or non-ability) to work of the employee and creating a more harmonious society.

HIV/AIDS and Anti-discrimination law in Portugal
Portuguese Labour Code (Art. 23)[15] expands the notion of disability to “chronic disease” and people living with HIV/AIDS are given this protection. Persons who believe to be victims of discrimination have access to the administrative or judicial procedure so that they can assert their rights, associated with appropriate sanctions for those who discriminate. In order to strengthen the position of victims, the law shifts the burden of proof on to respondents and empower victims to seek the help of associations.
Moreover, Law no. 46/2006, of 28 August, establishes anti-discrimination provisions for those with disabilities or aggravated and progressive health conditions, though HIV is not explicitly mentioned. The scope of this Statute is to prevent and prohibit direct or indirect discrimination for reasons of handicap or aggravated health risk and to sanction the activities, which infringe fundamental rights or that imply the refusal or limitation of economic, social and cultural rights, by public or private entities. The violation of the equality principle for reasons of handicap or aggravated health risk of a citizen is a discriminatory act. Concerning labour protection the Statute provides protection against the adoption of criteria which would limit access of handicap people or people with aggravated health risks, as well as the production or diffusion of job offers, which contain any preference related to handicap discrimination. Furthermore, this Statute creates an administrative body that will scrutinise “handicap and health discrimination” and creates a framework of administrative punishments, which include fees and other sanctions (suspension of business activity, prohibition of receiving state subventions, and so on).
Whether a HIV test is justified in any profession at all is debatable. But we can state, as a starting rule, that those cases are the exception and are rare. And even if we accept such tests, it is clear that the physician shall guarantee the confidentiality of that information and shall only write down a report stating weather the candidate (or the worker) is fit for the job or not fit, without mentioning the illness of the person involved (Art. 19 (3) Labour Code).
The scope of an HIV test would be the protection of third parties.[16] The risk to third parties is normally very low, since the virus is transmissible only through sex, blood and other organic fluids and mother-child transmission.[17]

The cook living with HIV
The Lisbon Court of Appeal decision of 29 May 2007 accepted that a HIV+ cook could not continue his professional activity, since he was a source of danger to third parties (clients), because they could be contaminated by “his blood, tear and sweat.” This decision seems not to be in line with scientific knowledge. As the Centre for Disease Control and Prevention (CDC) states: “HIV has been found in saliva and tears in very low quantities from some AIDS patients. It is important to understand that finding a small amount of HIV in a body fluid does not necessarily mean that HIV can be transmitted by that body fluid. HIV has not been recovered from the sweat of HIV-infected persons. Contact with saliva, tears, or sweat has never been shown to result in transmission of HIV”.[18]
Those who adopt the precautionary principle may be tempted to consider that any potential risk of contamination may lead to a modification in the labour contract, and therefore they would applaud this decision. However, such a point of view does not take into account the principle of proportionality nor the international and national rules for the protection of the worker. In fact, the rules concerning safety and hygiene at work (mainly restaurants) would impose the duty to avoid any kind of “exchange of organic fluids”; this independently of HIV.[19]
Even if there were any risk, the worker should have the right to have another post, as is demanded by Convention no. 159 ILO and Recommendation no. 168 ILO and, in national law, Art. 248 (2) Labour Code Regulation.

The surgeon living with HIV
There is a strong opinion according to which the surgeon should be removed from exercising his profession. Following that perspective the Portuguese National Ethics Committee for Life Sciences argued in favor of testing of physicians and limiting his capacity to perform invasive interventions.[20] Also the Recommendation No R (89)14 states: “Health care staff infected with HIV (…) should refrain from undertaking any "medical activities" that might create even a minimal risk of transmission to patients; this approach also applies to seropositive health care professionals working independently)”. And also the World Medical Association Statement on HIV/AIDS and the Medical Profession[21] affirms: “Physicians who are infected with HIV should not engage in any activity that creates a risk of transmission of the disease to others. In the context of possible exposure to HIV, the activity in which the physician wishes to engage will be the determining factor. Whether or not an activity is acceptable should be determined by a panel or committee of health care workers with specific expertise in infectious diseases.”
Such approach is based on the fear that the surgeon may contaminate the patient. However, it is fair to be so stringent with professionals with HIV, as we are not being that rigorous with other hazardous or dangerous situations in medicine? For example, “Substance abuse, major depression, and lack of familiarity with particular procedures are all associated with identifiable risks to patients that likely exceed the risk of transmission of HIV to patients.”[22] On the other hand, as noted by the American College of Surgeons: “Present recommendations unsubstantiated by scientific data have created an unhealthy atmosphere of doubt in the minds of patients and the public regarding the problems of HIV transmission. Any regulatory efforts by concerned bodies should be based solely on documented scientific data, not on unfounded hysteria.[23] And the College of Surgeons adds: “There has been no documented transmission of HIV infection in the performance of surgical treatment from a surgeon to a patient to this date. (… ) While basic, clinical, and epidemiological research continues, a number of issues remain unresolved. The surgical community emphasizes that available scientific data indicate that transmission of HIV infection from physician, surgeon, or nurse to patient is extremely rare. The overall risk of transmission of HIV from infected surgeons to patients appears to be so low that costly measures, such as testing and limiting of work, are not justified. This is especially true now that antiretroviral therapy has advanced to a level to make many infected individuals virtually free of virus in their blood.”[24] Therefore, the American College of Surgeons recommends: “3. Based on data in the current literature, HIV-infected surgeons may continue to practice and perform invasive procedures and surgical operations unless there is clear evidence that a significant risk of transmission of infection exists through an inability to meet basic infection control procedures, or the surgeon is functionally unable to care for patients. These determinations are to be made by the surgeon's personal physician and/or an institutional panel so designated for confidential counseling. Such a panel should be composed of infectious disease specialists, surgeons, and other health care professionals who are knowledgeable about blood-borne infections.”
Last year, there was public notice that a surgeon (a specialist in laparoscopic surgery) working in Portugal is living with HIV. After a scientific discussion the Doctor’s Association decided that he should be allowed to continue working, as long as he fulfills safety precautionary rules, performing laparoscopic surgery; using two sets of gloves in case of invasive contacts and being accompanied by another surgeon. I would add that, if there were evidence of risk for the health of third parties (patients), the surgeon shall keep the right to perform non-invasive medicine, research and teaching activities.

[1] “Eduquer pour prévenir – le VIH/SIDA sur le lieu de travail dans le nord de la Russie”, Travail – le magazine de l’OIT, n.º 54 – Le travail forcé aujourd’hui, août 2005, 21-24 [23].
[2] Labour Organization, 2005, Genéve, International Labour Office.
[3] Organized jointly by the Office of the United Nations High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS.
[4] IPU/ UNAIDS (Geneva, 1999).
[5] See General Comment 14 on the right to health, the Committee on Economic, Social and Cultural Rights: It refers to protection measures towards persons living with HIV/AIDS. Concerning non-discrimination and equal treatment see paragraph 18.
[6] The European Convention on Human Rights (ECHR) sets out fundamental human rights which if accessed could significantly benefit people living with HIV across Europe. Furthermore, there are additional human rights instruments with far fewer signatories of value for people with HIV, in particular Protocol 12 of the ECHR, which extends the human right not to be discriminated against to any action of a public body and to any right enshrined in law, and the European Social Charter which guarantees social and economic rights including the right to health. Importantly, an Additional Protocol to the European Social Charter provides for a collective complaints mechanism to the European Committee of Social Rights, accessible to, amongst others, national NGOs. However, only a minority of Council of Europe member states have signed and ratified ECHR Protocol 12 or the Additional Protocol of the European Social Charter. Moreover, the Recommendation nº R (89) 14, of 24 October 1989 by the Council of Ministers of the Council of Europe is always a very valuable source of inspiration.
[7] In USA, Congress extended civil rights protection to HIV-infected individuals, as well as others with disabilities, with the passage of the Americans With Disabilities Act of 1990.
[8] National AIDS Trust, Legislation and Judicial Systems in Relation to HIV and AIDS, Seminar Report, London, December 2007.
[9] With regard to disability, there is no definition of disability at the EU level but there is some case law. The Navas case saw the European Court of Justice establish a difference between sickness and disability.[9] Disability involved a ‘limitation’ which could be a physical, mental or psychological impairment which lasted a long time. In other words, this was a medicalised definition focussing on impairments which hindered participation in the workplace. There is also a pending case Coleman v Attridge Law which concerned the application of disability anti-discrimination legislation to discrimination ‘by association’. The particular case involved someone who complained of discriminatory treatment in the workplace linked to the fact she was a career for a disabled son.
ECJ Case C303/06 AG's opinion 31.1.08: The Advocate General considers that such direct discrimination is prohibited. "The effect of the Directive is that it is impermissible for an employer to rely on religion, age, disability and sexual orientation in order to treat some employees less well than others...if someone is the object of discrimination because of any one of the characteristics listed in Article 1 then she can avail herself of the protection of the Directive even if she does not posses one of them herself. It is not necessary for someone who is the object of discrimination to have been mistreated on account of ‘her disability’. It is enough if she was mistreated on account of ‘disability’. Thus, one can be a victim of unlawful discrimination on the ground of disability under the Directive without being disabled oneself...The Directive does not come into play only when the claimant is disabled herself but every time there is an instance of less favourable treatment because of disability. Therefore, if Ms Coleman can prove that she was treated less favourably because of her son’s disability she should be able to rely on the Directive.”
[10] 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.
[11] 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.”
[12] Already in 1989 the Recommendation No R (89) 14 of the Committee of Ministers to member states on the ethical issues of HIV infection in the health care and social settings concluded: “In the light of present knowledge, voluntary testing, integrated into the process of counselling, is the approach which is most effective from the public health point of view, and most acceptable ethically and legally, provided that it is supported by vigorous information campaigns, full respect for confidentiality and the implementation of a non-discriminatory policy.”
[13] Constitutional Court Decision no 368/02 (25 September 2002) 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.
Constitutional Court Decision no 306/03 (25 June 2003) 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 positive or negative medical information, without disclosing concrete information of the candidate.
[14] See Data Protection Act (Lei no. 67/98, 26 October); for a notion of health information, see Art. 2 of Health Information and Personal Genetic Information Act (Law no. 12/2005, 26 January).
[15] The Labour Code implemented into Portuguese law Directive 2000/78/EC of 27 November 2000.
[16] The protection of the worker is a paternalistic approach, which in the case of HIV does not seem to be justified, except in exceptional circumstances.
[17] Guide de l’Organisation mondiale de la santé pour le SIDA et les premier secours sur le lieu de travail, See : http://training.itcilo.it/actrav_cdrom2/fr/osh/aids/aidsand.htm).
[18] See: http://www.cdc.gov/hiv/resources/factsheets/transmission.htm
[19] See also HIV/AIDS and the Food Handler by the Institute of Food Science & Technology Trust Fund (2003).
[20] Conselho Nacional de Ética para as Ciências da Vida (CNECV) (1996), Documentação, Vol. III (1995-1996, pp 118, 119-120).
[21] Adopted by the WMA General Assembly, Pilanesberg, South Africa, October 2006
[22] Amir Havely, AIDS, Surgery, and the Americans With Disabilities Act, Archives of Surgery, Vol. 135 No. 1, January 2000.
[23] American College of Surgeons. Statement on the surgeon and HIV infection. Bull Am Coll Surg. 1998;83:27-29.
[24] [ST-13] Statement on the surgeon and HIV infection (Revised May 2004) [by the American College of Surgeons].