HUMAN RIGHTS LAW AND ETHICS

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Tuesday, May 13, 2008

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HUMAN RIGHTS LAW AND ETHICS

Introduction

Global Human Rights

Why Human Rights is important in the context of HIV

Human Rights and Mother to Child Transmission

Since HIV/AIDS is a problem that profoundly affects most aspects of people's lives, it raises many social, economic, and cultural issues that relate to human rights, ethics, and law. Some focus on technical questions, such as the task of designing ethical protocols for HIV-related research involving human subjects. Others are broad issues that pre-date the epidemic, such as protecting the rights of commercially exploited children (a group especially vulnerable to HIV), guaranteeing the reproductive and sexual health rights of girls and women, and adopting legal or legislative instruments to ensure full integration and acceptance in society of persons living with HIV/AIDS.

Many people with HIV/AIDS suffer discrimination, intolerance, and prejudice. Creating an environment in which there is respect for the human rights of people living with the virus or affected by it in other ways (AIDS orphans, for example) will help them live a life of dignity without discrimination and also will reduce the numbers of people vulnerable to infection.

Strengthening the human rights of women, children, and marginalized groups is an important first step. For a variety of economic, social, and cultural reasons, human rights of such groups have been eroded in a number of countries. These groups are disproportionately affected by HIV/AIDS and have more limited capacity and access to resources to prevent or treat infection. In a climate of discrimination, people are less likely to present themselves for voluntary HIV testing and are thereby unable to access treatment, care, and support. This in turn hinders efforts by public health authorities to develop targeted policies and programmes to control the epidemic.

It is against this background that UNAIDS and the Office of the High Commissioner for Human Rights has jointly published International Guidelines on HIV/AIDS and Human Rights. These guidelines - which constitute an important framework for all best practices in the field of human rights and HIV/AIDS - offer concrete measures to protect human rights as an effective response to HIV/AIDS. They are important not just for people living with HIV/AIDS but also for society in general.

In broad terms, as set out in the guidelines, best practice in this area includes three main approaches:

Improving the capacity of governments to take on responsibility for dealing with the issues; encouraging them to coordinate their action across ministries, non-governmental organizations, and communities and to promote a supportive environment for groups vulnerable to HIV/AIDS
Reforming laws and legal support services, focusing on anti-discrimination, protection of public health, and the improvement of the status of women, children and marginalized groups
Increasing private sector and community participation in the response to HIV/AIDS, including building capacity and responsibility of civil society to respond ethically and effectively.

Global Human Rights

There is increasing recognition that public health often provides an added and compelling justification for safeguarding human rights, despite the respect, protection and fulfillment which they merit in their own right. In the context of HIV/AIDS, an environment in which human rights are respected ensures that vulnerability to HIV/AIDS is reduced, those infected with and affected by HIV/AIDS live a life of dignity without discrimination and the personal and societal impact of HIV infection is alleviated.

The guidelines in this document are the product of the Second International Consultation on HIV/AIDS and Human Rights, organized jointly by the United Nations Office of the High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS (UNAIDS). They provide an important means for supporting both human rights and public health, emphasizing the synergy between these two areas. These guidelines offer concrete measures that could be taken to protect human rights and health where HI V/AIDS is concerned. Click here to download.

Why Human Rights is important in the context of HIV

Many of the people who have been and will be most affected by the epidemic are people who are already in a socially disadvantaged position. Increasingly, inequalities of gender, race and wealth are emerging in the demography of HIV infection, with infection rates increasing disproportionately among women and even more so among poor women. The people who remain vulnerable are those who are denied the means of protecting themselves against HIV because of economic need, for example, or powerlessness to control the basis upon which their sexual relationships take place. Many factors come into play here, including poverty, geographical isolation, inadequate health care and health education, and cultural values that compel certain practices that expose some members of the community to the risk of HIV transmission. This implies that the need to incorporate human rights concerns into HIV policy has a particular resonance. As Justice Michael Kirby has said, human rights matter most when they are most under threat.

Too often, the HIV policy debate is characterised as an inevitable conflict between public health and individual rights. Policies that infringe individual rights, such as forcible HIV testing or detention are defended on the basis of an overriding need to protect public health. But an effective response to the epidemic demands a more complex understanding. However, recognition by all individuals, the infected and the uninfected, and by communities and governments that they have a common interest in working together to do whatever is necessary to contain the spread of HIV in order to ensure the survival of their families and societies. The emphasis in our response to the epidemic must be on this community of interest rather than on the potential conflicts.

These underlying socio-economic causes of vulnerability to HIV operate in many ways. Because HIV infection is preventable, people who have access to information and appropriate preventative measures and have the means to implement these measures will in the future be able to protect themselves against infection.

So there is a special need, a special responsibility, to honour the rights and needs of these people. Moreover, the fact that these human rights are so much under threat presents unique challenges to effective policies for preventing the further spread of HIV.

HUMAN RIGHTS LAW & HIV :

Discrimination against people with HIV is a deep and evasive problem exacerbated by the fact that many of the people who have been and will be affected by the epidemic are people in a socially and economically disadvantaged position. No programme to address the epidemic can afford to ignore the fact that HIV threatens human rights as profoundly as it threatens public health.

The principles that should guide legal policy on HIV are very simple:

a) The law can and must be used to establish a protective and supportive framework for people affected by the epidemic and not a punitive one;
b) Careful and informed ethical debate can guide the direction of the evolution of the law in this area;
c) The law can be used actively as an instrument to bring about change in personal behaviour;
d) Only by having an informed group of engaged lawyers will the legal and human rights issues associated with the epidemic be properly tackled.

HIV and ETHICS

There are different ethical issues related to HIV / AIDS testing, treatment, and research. Key issues include confidentiality, informed consent, end of life, research design, conflict of interest, vulnerable populations, and vaccine research. In this light a serious thought to ethical dimensions of HIV/AIDS is indispensable.

It has become common in the context of HIV policy to talk about ethics and law in the same breath. This is done for obvious reasons because the ethical dilemmas that arise are invariably played out in legal terms. Nonetheless, the blurring of the distinction between law and ethics can sometimes obscure the fact that tensions may exist between ethical imperatives and legal obligations. It is therefore worth considering the interaction between law, ethics and HIV.

We like to think that ethics and law do go hand in hand. With some of the very complex dilemmas that arise with HIV -- such as whether to tell the wife of a man with HIV that she is at risk -- the existing law is not a sufficiently subtle mechanism to deal with the problem. Existing legal principles may be inadequate to mediate all the different interests involved and may lead to inappropriate and anomalous results.

The potential inadequacy of existing law does, however, provide us with an opportunity. Because so many of the legal issues thrown up by the HIV epidemic are new, the development of new legal principles and solutions will be required. There is therefore an opportunity to direct the law in the way we want it to go, that is, to have ethics drive law reform and not the other way around. A real possibility is that careful and informed ethical debate can guide the direction of the evolution of law.

WOMEN

Women have enormous social and economic obstacles to avoiding the risk of HIV infection. Their position within families and societies means they are often not free to make their own decisions about their sexual relationships or to insist upon measures, such as the use of condoms or fidelity on the part of their partner, that would reduce the risk of exposure to HIV. Cultural expectations in relation to marriage and childbirth and the absence of means of economic support outside the family unit compound the difficulties for women to avoid exposure to the virus.

The subordination and abuse of women and girls drives the HIV/AIDS epidemic in every part of the world. Some of the contextual factors that feed this are

Society�s double standard for sexual conduct: men, even in long-term unions, may �graze� while women may not question or defy this;
stereotypes and social norms of both femininity and masculinity that victimize men as well as women;
the disparate impact of poverty on women and girls, which too often leads to situations in which they are constrained to trade sex for survival;
the economic dependence of women and girls on men, which limits the ability of women to leave dangerous marriages and other unions; and
A global deterioration in reproductive rights.

http://www.unifem.org/gender_issues/hiv_aids/at_a_glance.php

Women's Right to Safe Sexuality and to Autonomy in all Decisions Relating to Sexuality is respected almost nowhere.

As it is intimately related to Economic Independence, this right is most violated in those places where women exchange sex for survival as a way of life. And we are not talking about sex work but rather a basic social and economic arrangement between the sexes, which results on the one hand from poverty affecting men and women, and on the other hand, from male control over women's lives in a context of poverty.

By and large, most men, however poor can choose when, with whom and with what protection if any, to have sex. Most women cannot.

As such, our basic premise has to be that unless and until the scope of human rights is fully extended to economic security (i.e. the right not to live in abject poverty in a world of immense riches), women's right to safe sexuality is not going to be achieved.

A Minister of Health of one of the southern African countries declared that women have a right to sexuality which does not endanger their lives. A guiding principle perhaps for all our work in HIV/AIDS/STI.

The Major Issues

Lack of control over own sexuality and sexual relationships (see above)
Poor reproductive and sexual health, leading to serious morbidity and mortality. Rates of infection in young (15-19) women are between 5 and 6 times higher than in young men (recent studies in various African populations)
Harmful cultural practices: from genital mutilation to practices such as "dry" sex
Adolescents: access to education for prevention, (in and out of school and through media campaigns), condoms, and reproductive health services before and after they are sexually active. Promotion and protection of adolescent reproductive rights (particularly girls). Obstacles in terms of laws and policies, health service provision, cultural attitudes and expectations of girls and boys' sexual behavior, cultural practices, and educational and employment opportunities.
Disclosure of status, partner notification, confidentiality. These are all more difficult issues for women than for men for the reasons discussed above - negative consequences; and the fact that women have usually been infected by their only partner/husband.
Because disclosure is more difficult, women's access to care and support is further decreased. VCT as an entry point for care and prevention is vital. Protection for women when they disclose status must be assured.

Human Rights Issues Relating to Mother to Child Transmission (MTCT)

Informed consent:
    to testing during pregnancy,
    to the intervention itself,
    to termination/continuing with the pregnancy.

Provision of adequate pre-test counselling, pre-intervention counselling/information; infant feeding counselling; contraceptive advice especially if not breastfeeding.
Protection of confidentiality, including shared confidentiality in the interests of care and support; and the problem of not breastfeeding when this amounts to "public disclosure" of positive serostatus. Legal provisions, health service practices and community/NGO support.
Provision of family planning services, alternative infant feeding/breastmilk substitutes, material support for fuel, water etc. in addition to the intervention itself.
Involvement of partner/husband at all stages, positive and negative consequences.
Potential adverse effects of taking antiretrovirals (ARVs) especially in repeat pregnancies of an HIV infected woman.
Women's access to care and treatment apart from the MTCT intervention, woman as vessel for the baby.
Generation of orphans. Parents likely to die. On mother's death, baby's survival chances much reduced. Should woman herself be treated, at least for common HIV related illness?
Selection of women to benefit from MTCT.

Know Your Rights

In India, all people are entitled to basic or fundamental rights in the eyes of the law. It does not matter what the religion, race, sex, or place of birth of that person is. Neither do these rights change just because HIV affects an individual. It's important to be aware of your basic fundamental rights and to remember that you can do something if they are infringed. Here's a brief idea of three of the most important rights in the HIV scenario. Click here to read more...