Dimensions of Ethical Issues in HIV/AIDS
The human immunodeficiency virus infection and the acquired immunodeficiency syndrome (HIV/AIDS) is a spectrum of conditions caused by infection with the human immunodeficiency virus and today it is not just a medical problem but instead a medical challenge, flanked with social and legal repercussions. There are various issues relating to confidentiality, discrimination and rights of ‘People living with HIV and AIDS’ (PLWHAs) for equality, dignity and equal opportunity at the work place and at medical health care centres. There are no specific laws to safeguard the interest of the PLWHAs, although constitutional rights are good enough to assure equality and dignity. Confidentiality of reports of all seropositive cases is essential to maintain privacy and reassurance to the concerned person. However, safety of others is also important and should not be compromised on account of confidentiality. Testing has to be done as per NACO (National AIDS Control Organisation) guidelines with adequate counselling and informed consent has to be taken before collection of blood samples. Stigmas and discriminations have to be addressed with special legal provisions, although existing constitutional laws and other notifications provide some relief to the PLWHAs.
Dimensions of HIV ethical issues have been growing and spreading along with the global spread of HIV. Till recently, testing and reporting of HIV seropositivity in many countries was done strictly in an anonymous manner to prevent the disclosure of the identity of the patient. In addition, the clause of confidentiality is important to safeguard privacy and prevent a multitude of discriminations on the unfortunate victim. It also provides security and prevents him/her from going underground. Disclosure of a positive report to the concerned person may itself precipitate vengeance and suicidal tendencies, when adequate and effective counselling have failed, apart from igniting other social and legal problems. Social attitudes, cultural responses, discrimination and general animosity towards people living with HIV/AIDS (PLWHAs) have given birth to many ethical and legal issues, creating a need for special laws to safeguard the interest and concerns of PLWHAs at the work place, at health care institutions and in the community at large. Community and social organizations have a role in supporting the cause of PLWHAs and they must work to bring an end to prevailing stigmas and discriminations.
HIV RELATED LEGISLATIONS :
The HIV policy resource bank category covers all State and Federal laws that protect the confidentiality of HIV related information of patients in the United States. In India, there are no HIV specific laws that can restore the confidence amongst PLWHAs and assist them to approach for legal aid in the event of a violation of their rights. These individuals are primarily ostracised and demotivated to come out in public and fight for justice often because the first step involved in such remedial procedures is the disclosure of their identity and HIV status.
There have been various international conventions pertaining to HIV/AIDS which safeguard all the fundamental rights of HIV positive individuals, especially relating to non- discrimination, job opportunities and right to equality before law. Also some laws that have been introduced from time to time have subsequently been repealed.
The Goa Public Health Amendment Act (1985)[2,3] which authorised the State government to arrest and imprison any individual found positive for HIV/AIDS was soon repealed in 1996. The Railway Board administrative notification (1889) permitting denial of passage to HIV/AIDS patients was rescinded in 1996.
The UNAIDS guidelines (1996), calls for protective care and support for those infected with HIV, and also ensures social and cultural equality within the community without discrimination. The Ministry of Health of the Indian Government issued an administrative notification directing non-discriminatory access to all PLWHAs in all Central and State government health care institutions in 1992.
There are existing provisions in the Constitution, which should take care of all inequalities and the same are applicable to HIV/AIDS cases. Article 14 of the Constitution guarantees the right of equality of treatment to the HIV/AIDS patients. Articles 15 and 16 protect them against discrimination. Article 21 protects their right to life and personal liberty and ensures their right to privacy. The Directive Principles of State Policy also cast a duty upon the State to ensure the right to livelihood and prevent discrimination. Article 39 directs the states to ensure that all citizens including the HIV/AIDS patients have an adequate means of livelihood. Article 42 casts a duty upon all states to make provisions for securing just and humane conditions at work. States have been entrusted with the duty to improve public health vide Article 47 of the Constitution. In spite of all the constitutional provisions, discrimination and denial of opportunities to PLWHAs in different fields still remains rampant.
To give some respite to the existing inequalities, the Union Government has signed various treaties aimed at protecting the rights of those who are positive for HIV/AIDS and of those who are vulnerable to AIDS in order to safeguard their human rights and prevent the spread of HIV. The National Policy on HIV/AIDS and the world of work, is a policy document formulated by the Ministry of Labour and Employment after consultation with ILO (International Labour Organization), NACO and social partners to promote awareness about HIV/AIDS and protect the rights of those who are infected, assuring them equality and dignity.
Although there are no specific laws, there have have been some judgements in different cases from time to time which act as precedents. In disclosed HIV status to the fiancé of a HIV positive subject, the Supreme Court held that HIV positive people did not have the right to marry, but subsequently upheld the right to marry in 2002. The Bombay High Court on January 16, 2004 upheld employment of PLWHAs. The court said that protection and dignity of HIV infected person is essential for the prevention and control of HIV/AIDS. There are many other similar cases on record.
To set the rules straight, there have been continuous efforts to introduce various legislations from time to time, but no such bill has seen the light of the day. All these bills have faced some objections and some reservation on scrutiny and are awaiting cabinet approval. The 2007 HIV/AIDS Bill, that stresses on non-discrimination and covers almost all other issues, also provides protection to those involved in the needle exchange programme for the PLWHAs. This clause is looked upon by law department as providing support to those indirectly promoting drug abuse and amounts to abatement of crime and hence contrary to the existing laws.[3,5] In the absence of any such laws, the overall ethical principles of respect for a person, beneficence and justice should be adhered to as is the case with American bioethics.
The confidentiality about disclosure of the identity of the subject has proved to be counterproductive and has resulted in the delay in initiation of anti-retroviral therapy. Considering this negative impact, NACO has slightly changed the rules and is allowing all NACO aided laboratories to receive samples and despatch the report with patient’s name along with the code, so that these cases may be registered with ART centres at an early date and the necessary follow up be done without delay. We should also take into account the amended code of Medical Ethics 2002 (2.2), which states that, confidential information revealed by a patient should never be revealed unless this revelation is required by law of the State. However, a physician must use his judgement to determine whether his duty towards society requires him/her to employ confidential knowledge obtained, so as to protect a healthy person against this communicable disease.
In HIV infected individuals, confidentiality in general, is important to safeguard privacy, a sense of security and restore confidence in individuals who are battered with a positive blood test report. It further promotes acceptance of the report, encourages them to disclose their HIV status and protects them from facing the horror of discrimination.
COUNSELLING AND CONSENT :
Another issue linked to testing which should be considered before collecting the blood for testing is counselling. Pre-test counselling is done before collection of sample for testing wherein the subject is given thorough understanding about HIV/AIDS, the risk he/she has undertaken and what a positive test result would mean in the event of the blood test report turning out positive. This session also prepares the patients for blood collection and motivates them for free and wilful consent. The pre-test counselling is supplemented by post-test counselling which is done before the test results are handed over to the patients. This gives an opportunity to the counsellor to discuss once again HIV related issues and helps the patient to cope up with the test results and prevent crisis. Fingers may be pointed towards doctor or counsellor involved in this activity in the event of patient committing suicide, for failure to provide effective counselling. When a patient approaches a doctor of his own free will for treatment there is an implied consent for the doctor to examine and perform any test which is in the best interest of the patient and his management. As a routine, a written consent is obtained from husband, wife or guardian before an operative procedure or other major procedures. HIV testing is not like any other routine test, which can be done with implied consent of the patient, but it instead requires written informed consent. This consent is to be given by the patient himself or his spouse, when he/she is unconscious or not in proper frame of mind. Similarly, the consent is to be obtained from the guardian in case of a minor. In the case of an unattended, unconscious patient it requires at least two treating clinicians to decide that testing is required for the patient for more effective management of the case. Testing cannot be done just in the interest of the treating clinician or his safety.
TESTING AND REPORTING :
It is imperative that testing has to be done with caution as per the national guidelines using strategy testing, as a positive report could open a spectrum of problems for the person concerned and his close family members and friends. Matters become worse when the two partners point fingers to each other for transmitting the infection. It may be difficult to decide as to which partner got infected first. The partners that is found to be in advance stage of AIDS, does not necessarily mean he or she contacted the infection first. The fall out of this scenario is often broken homes and divorce. The outcome may not be any better in discordant couples when only one partner is seropositive.
No laboratory, should give a report without consideration of NACO guidelines. The test reports are to be handed over to the concerned subject. The report may be communicated to the third party only after prior permission of the concerned person. However, under legal obligation, results may be communicated to third party without prior permission of the concerned person.
Partner notification is critical in a situation where one partner is seropositive and the other is either seronegative or unknown. A partner’s right to protect himself /herself is more important than confidentiality. Hence, testing centres should encourage seropositive individuals to communicate their status to their partners and counsel them to take appropriate measures to ensure that they do not transmit the infection to their partners. The testing centre may be justified in communicating the report to the partner under these circumstances when the seropositive individual is reluctant to disclose the status.
Mass screening and mandatory testing of HIV before marriage were delicate and debatable issues in the past. Some professionals in India support mandatory testing for all patients admitted in the hospital, as this would contribute to the safety and protection of all the health care professionals involved in care of these patients.
However, the consensus now is that mass screening and indiscriminate testing of all patients will not serve any purpose as it can never be completed, it is not cost effective and those found negative could get exposed subsequently. Mass screening would also be very challenging as HIV screening requires informed consent, moreover, the cost involved in this exercise could be diverted for creating awareness instead. Mandatory screening in certain situations may be justified, such as a government directive for mandatory screening of blood and blood products before transfusions which is a boost for HIV prevention strategy.
The issue of disloyalty and cheating on the part of a prospective positive partner has raised a strong chorus for mandatory testing for HIV before marriage. Testing before marriage will not serve any purpose as testing alone will not change the behavioural pattern of an individual. The reason behind screening before marriage is also not tenable, as lack of mutual trust and sincerity could always expose the other partner at risk at any time even after marriage.
The ability of an infected mother to pass on the infection to her newborn baby has created additional problems and apprehension in the minds of prospective foster parents who may be keen to adopt children born to HIV positive mothers. As health care professionals we would fail in our duties if we do not provide care, support and treatment to expectant mothers and refer them to the appropriate centres that deal with prevention of parent-to-child transmission. This will reduce the transmission risk significantly.
Transmission of infection from mother to child could also occur through breast milk when a mother is seropositive. In patients with a low socioeconomic background, the mother may not be educated well enough to understand how to cope with milk supplements or may not be financially able to afford it. Hence, the decision on whether she should breast feed or not, should be taken on an individual basis.
STIGMAS AND DISCRIMINATION :
The other more pressing issue is one of discrimination, faced at the work place, in health care centres and other public service outlets, which have opened the gates for legal battles. Employers often use a false pretext such as dereliction of duty, to prepare the ground for dismissal of an employee. Discrimination by a co-employee is also very much evident at various work places. Denial of job opportunities based on HIV seropositivity is another criminal whip being adapted by some companies. The Government of India notification clearly states that there should be no discrimination based on HIV positivity. NACO has issued a comprehensive policy for HIV testing, based on which mandatory HIV testing shall not be imposed as a precondition for employment or for providing health care services.
Stigmas and discrimination are still closely associated with HIV, thereby forcing many infected individuals who know their status to go underground. Many insurance companies, service providers and employers often insist on prior testing for HIV of concerned individuals without any legal backing. Anticipating and responding to these problems, the WHO Global Programme (GPA) passed a resolution on avoidance of discrimination in relation to HIV infected people and people with AIDS.
Victims of rape and sexual abuse have often become unfortunate victims of HIV infection or live in fear of contracting HIV/AIDS until the window period is over. These issues have added more suffering to the HIV exposed person and has crippled their lives even before HIV can begin to doom their fate.
Finally, let us also understand that HIV infected persons are equally privileged to all rights enjoyed by others that are not HIV infected. The Constitution of India guaranties all fundamental rights; these include right to equality and non discrimination, right to justice, right to information and all other basic rights. A question we might often ask is, ‘why do we need additional laws for HIV/AIDS if the existing laws give adequate shelter to the HIV/AIDS victims?’ One good reason is to have this special legislation convey a strong signal to the public that, HIV/AIDS victims cannot be discriminated or neglected and that they are very much a part of the society we live in and hence enjoy all the rights that others enjoy. These laws will go a long way in creating reassurance to the unfortunate victims, including the right to marry, but they have a strong moral obligation and duty also to protect others and not transmit their infection. The community at large and social organizations also have a responsibility to get involved in tackling all the issues, primarily the major issue of stigmas and discriminations.
- Confidentiality and disclosure. The centre for HIV law and policy http//www.hivlawandpolicy.org/issues/confidentiality-and-disclosure
- Goa Public Health Amendment Act of 1985 (section 53.1. v 11).
- Kaur V, Singh G. Ethical and legal issues in AIDS. Review article. Indian Journal of sexually transmitted diseases and AIDS. 2011; 29(2):63-66.
- Helpline law. Rights of HIV/AIDS patients in India. http://www.helplinelaw.com/civil-litigation-and-others/RHPI/rights-of hivaids-patients-in-india.html.
- The HIV/AIDS Bill 2007.
- Leslie EW, Bernard LO. Ethical dimensions of HIV/AIDS. HIV inSite Knowledge Base Chapter. August 2001: 1-11.
- Code of Medical Ethics Regulations 2002 (Amended upto 1st February) Published in part III, section 4 of the Gazette of India, dated 6th April, 2002.
- Abraham S, Prasad J, Joseph A, Jacob KS. Confidentiality, Partner notification and HIV infection. Indian Journal of Medical Ethics. Online. ISSN: 0975-5691 I PRINT ISSN: 0974-8466.
- National guidelines for HIV testing. July 2015. July 2015 National Guidelines for HIV Testing, National AIDS Control Organization, Ministry of Health & Family Welfare, Government of India.
- National policy on HIV/AIDS and world of work. Government of India. http://www.labour.nic.in/sites/default/files/NationalPolicyonHIVAIDS.pdf.
- World Health Organization, Global Programme on AIDS: Current and future directions of HIV/AIDS Pandemic. Geneva, April 1999.