Stigma and discrimination triggered by HIV and AIDS lead to significant human rights violations for persons living with HIV/AIDS. How have the Indian courts handled these and other issues such as confidentiality and consent to testing?

Persons living with HIV/AIDS (PLHA) today face segregation in schools and hospitals under cruel and degrading conditions, denial or loss of employment, denial of shelter in the matrimonial home, arbitrary testing, violence, and even murder. A lot of the stigma comes from the association of HIV infection with already stigmatised and socially/morally ‘disapproved’ and sometimes illegal behaviours and practices, such as sex between men, injecting drug use, sex work and even premarital or extramarital sex.

Discrimination is antithetical to equality, which is a right guaranteed to us in India by Articles 14, 15 and 16 of the Constitution. Equality implies an essential sameness or likeness, on the basis of which people possess the same privileges and are granted equal rights. Acts of discrimination are therefore a violation of one’s right to equality. Case law on discrimination and HIV/AIDS tends to be concerned with a few key issues.

The first is discrimination on the basis of one’s HIV status in the fields of employment, health care, education, and housing, and usually involves the denial of or restrictions on access to these services or institutions. The second is the concept of ‘reasonable accommodation’ (which means any modification or adjustment made to a job or to the workplace in order to facilitate access or participation of a PLHA) and the conditions under which this mechanism should be set up. And the third is the discriminatory impact of mandatory testing in the health care system and employment, particularly in the armed forces.

A landmark anti-discrimination case in the Bombay High Court that affirmed the rights of PLHAs in the workplace was MX v. ZY [AIR 1997 Bom 406] where MX, a casual labourer, was tested for HIV by his employer, ZY, a public sector corporation, prior to being regularised into a permanent position. MX tested positive for HIV, and though otherwise fit, was rejected from being regularised, and his contract was terminated. MX filed a writ petition in the Bombay High Court, arguing that the company’s rules (mandatory HIV testing and denial of employment to positive people) and actions violated Articles 14 (Equality before the law), 16 (Equality of opportunity) and 21 (Right to life and personal liberty) of the Indian Constitution. The court ruled that:

This issue has been especially contentious in employment settings that require a high level of physical fitness such as the police, the armed forces and paramilitary. In RR v. Superintendent of Police & others (Unreported [2005] Karnataka Administrative Tribunal), RR, was tested for HIV as a requirement for entry into the police force. On being found to be HIV-positive his job application was rejected. RR approached the Karnataka Administrative Tribunal challenging the constitutionality of a circular issued by the director general and inspector general of police mandating that applicants testing HIV-positive would not be inducted into the Karnataka Police.

The Tribunal declared that a person who was fit, otherwise qualified, and posed no substantial risk to others cannot be denied employment in a public sector entity. It also found that the policy circular that denied employment on grounds of an HIV-positive diagnosis alone was a violation of Articles 14 and 16 of the Constitution of India, and prohibited the government from denying employment on these grounds in future. It directed that RR be given employment as a police constable from the date he qualified for the post and that his service benefits should also be assessed from that date.

Discrimination in the workplace

There are innumerable cases of discrimination in the workplace that have been adjudicated, including:

Though the above cases and discussion are specific to discrimination in the workplace, the constitutional guarantee of equality also extends to other areas like healthcare, education, travel etc. At present the Supreme Court in Sankalp Rehabilitation Trust & another v Union of India is hearing a case about HIV-related discrimination in healthcare settings.

While the Constitution and the cases above make it clear that the public sector cannot discriminate on the basis of HIV, discrimination in and by the private sector is more difficult to address. While most countries have anti-discrimination legislation to cover discrimination in the private sector, this is not the case in India.

Consent and testing

The principle of consent is based on the fundamental principle of the autonomy of an individual, and is recognised within the framework of the right to life and personal liberty in Article 21 of the Indian Constitution. Legal issues related to consent in the HIV context arise primarily with regard to HIV testing and treatment. The most important reason for taking consent from a person before testing and treatment is respect for human dignity and bodily integrity. Not obtaining consent could result in a criminal charge of assault or battery or a civil claim for damages or trespass to a person.

The concept of consent has three important aspects: first, consent is valid only if the person giving it is competent to do so; second, consent must be properly informed; third, consent must be voluntarily given. The patient has a right to all information relevant to the decision of whether or not to consent to a particular diagnostic test, a test to determine the line of treatment or the line of treatment itself. Informed consent implies informing the patient of the implications of the tests and treatment and risks involved in the treatment prior to taking consent from the patient.

Though the common law on consent is not fully developed in India, references to these principles exist in the Indian Contract Act, 1872and the Indian Penal Code, 1860. The concept of consent is elaborated in Section 10 of the Indian Contract Act. All agreements are contracts made by the free consent of parties competent to contract. Consent is when two or more persons agree upon the same thing in the same sense. Consent is free when it is not obtained by coercion, undue influence, fraud, misrepresentation and mistake. Even though consent in India is recognised in terms of contracts rather than as a principle of tort, the principles of consent may be utilised for medical testing and treatment. The Medical Council of India had laid down guidelines that are now issued as regulations in which consent is required to be taken in writing before performing an operation. Similarly the rules under the Drugs and Cosmetics Act, 1940 speak of consent for research.

Mandatory testing that is not based on informed consent is a violation of the right to autonomy, has had negative public health consequences and has proven to be detrimental to HIV prevention efforts. Testing for HIV is unlike any other diagnostic or therapeutic test because of the profound consequences – social, financial, medical and emotional – of a positive diagnosis. There is still an overwhelming fear of the disease, concomitant with the fear of stigma and discrimination. Without a doubt, a positive diagnosis changes a person’s life irrevocably, and so public health strategies across the world struggle to determine whether consent should be taken prior to testing, whether testing should be voluntary or mandatory, whether consent should be informed, how much information is required for consent to be truly informed, when testing can be done without consent, and so on.

In India, mandatory HIV testing policies were, as in the case of other countries, mooted at the beginning of the epidemic. The National AIDS Prevention and Control Policy (NAPCP) recognises the counter-productive nature of mandatory testing and notes that the State “feels that there is no public health rationale for mandatory testing of a person for HIV/AIDS.”

In 1995, the National HIV Testing Policy was formulated to lay down protocols for testing to monitor the trend of HIV infection, to test blood or organs or tissues for ensuring safety to the recipient, to identify individuals with HIV infection for diagnoses and voluntary testing purposes and for research. Mandatory screening for HIV is recommended only for blood transfusion safety and for screening donors of semen, organs, or tissues to prevent transmission to the recipient of the biological products. In these circumstances, the tests cannot be linked to the identity of the individual.

As seen above, the Indian private sector remains virtually uncontrolled while adopting discriminatory practices such as mandatory testing for employment and access to services, particularly health care. Mandatory testing is also being considered by the armed forces. In relation to immigration, the minister for Health and Family Welfare, in September 2002, declared that foreigners in India, including students, no longer had to undergo mandatory HIV testing as it contravenes the testing policy of the World Health Organisation as well as the National HIV Testing Policy.

While Indian laws on the issues of consent in the health care setting are not fully developed, there is a plethora of international case law:

Confidentiality

Although India does not have a specific law on confidentiality, courts have construed Article 21 of the Constitution - the fundamental right to life and liberty - to include the right to privacy, from which is derived the right to confidentiality. This implies that every person has the right to a sphere of activity and personal information that is exclusive to them and that they have the right to disclose as they please. In legal terms, confidentiality exists within the parameters of a special relationship (doctor-patient, attorney-client, for instance) that is dependent on factors such as mutual trust, or to impart services.

Legislatures and courts around the world have gone to some length to protect confidentiality on the grounds of privacy and public interest. In fact, in the HIV context, protecting privacy is often seen as being in the public interest. The maintenance of confidentiality of an individual’s health status is one of the cornerstones of a rights-based legal and public health response to HIV/AIDS. Given existing prejudices, the disclosure of an individual’s HIV-positive status indisputably leads to them being ostracised and discriminated against. People avoid a health care system that violates their confidentiality and leads to their stigmatisation, which ultimately drives the epidemic underground making attempts to control it ineffective.

The right to confidentiality has thus been viewed as a crucial component to encourage those most at risk to come forward for HIV testing, counselling and treatment. However, the principle of confidentiality is not absolute and has been circumscribed in law with specific provisions. This has been done by drawing a fine balance between the importance of maintaining confidentiality and that of disclosure in exceptional circumstances.

Accordingly, two divergent interests are balanced in legal approaches to this issue, ie, the public interest of maintaining the confidentiality of an individual vis-à-vis the public interest in disclosure of the information. The principle of disclosure states that it can only be made with the consentof the person concerned. However, the law also lays down situations where it may be necessary to disclose the HIV status of an individual irrespective of consent being obtained. These situations arise where:

Courts also maintain that the potential negative impact of disclosure must be mitigated through detailed protocols that provide mechanisms by which HIV status is to be revealed to a third party.

Indian law has not addressed confidentiality in a substantial manner and there have not been many legal developments in the sphere of confidentiality and HIV/AIDS. The Supreme Court has issued a judgment, though, that impacts partner notification, and allows for disclosure of a person’s HIV status to their partner. It is unfortunate, however, that in its judgment the court gave no direction regarding the protocols and methods by which this disclosure was to take place.

This emerged from the Supreme Court case of Mr. X v. Hospital Z [(1998) 8 SCC 296] which raised other critical issues (the right of PLHAs to marry), in addition to the right to confidentiality. Mr X donated blood for his uncle’s surgery at Hospital Z. Months later, Hospital Z informed the uncle that Mr X's blood had tested positive for HIV. Meanwhile, Mr X was to be married to Ms Y, but he himself called off the wedding when he heard about his HIV status. However, several people including members of Mr X’s family and the larger community had been made aware of his HIV-positive status because of the public nature of the wedding being arranged and then cancelled, and he was completely ostracised by the community, and finally had to leave the state.

Mr X approached the National Consumer Disputes Redressal Commission (NCDRC) for damages against Hospital Z, on the grounds that they disclosed confidential information. The Commission dismissed the petition on the grounds that Mr X could seek remedy in the civil court. Mr X therefore approached the Supreme Court. The question of law before the court was whether the NCDRC had the jurisdiction to rule on a case in which a plaintiff’s (Mr X) HIV-positive status was disclosed by the hospital to third parties.

The Supreme Court, however, ignored the limited question before it and chose to pass a judgment on the merits of the case and held that an HIV-positive patient who may transmit the disease to his or her prospective spouse is not entitled to the maintenance of confidentiality, since the life of the spouse has to be saved. Therefore, a hospital can disclose a patient’s HIV status to the prospective spouse (partner), and in fact, since acts that are likely to spread communicable diseases are a crime under the Indian Penal Code, the failure of the hospital to inform the spouse of the disease would make them participant criminals. The court also ruled that since being infected with a venereal disease (read HIV/AIDS) is grounds for divorce under Indian matrimonial laws, a person suffering from such a disease has no right to get married until they are cured.

In this judgment, the Supreme Court not only upheld the breach of Mr X’s confidentiality, it also circumscribed the rights of PLHA to marry. An appeal was filed, seeking clarification, and challenging the judgment of the Supreme Court decision to suspend the right of PLHA to marry when that was not even an issue before it. In the appeal, Mr X v Hospital Z, [AIR 2003 SC 664], also known as the ‘right to marry’ judgment, while the Supreme Court rescinded its earlier observations regarding marriage, and restored the right to marry for PLHA, it upheld its previous decision about partner notification maintaining that this disclosure was permissible.

Many countries permit partner notification by healthcare workers, even while maintaining strict codes of confidentiality. They do this however by adopting a uniform set of protocols to regulate the process of notification. Some of the conditions of these protocols include:

Atiya Bose is media and communications officer and Kajal Bhardwaj is head of the technical and policy unit at the Lawyers Collective HIV/AIDS Unit. The Lawyers Collective HIV/AIDS Unit was set up in 1998 based on a realisation that law, policy and judicial action that upheld the human rights framework had a central role to play in effectively containing the HIV epidemic. The Unit comprises lawyers, law students and activists working in offices in Mumbai, Delhi and Bangalore, and offers free legal services to persons living with, affected by or vulnerable to HIV and undertakes advocacy and research initiatives related to law, rights and HIV.

© Lawyers Collective HIV/AIDS Unit www.lawyerscollective.org

Infochange News & Features, February 2008