Meeting Report

On December 10, 1948, the United Nations General Assembly adopted a set of 30 human rights principles with the goal of ensuring individual rights and freedoms worldwide. In addition to affirming rights such as freedom, equality, education, and due process, the Universal Declaration of Human Rights (UDHR) addresses the most basic of individual rights—the right to personal health and wellbeing. Six decades later, while there are many success stories, human rights violations worldwide continue to have dire consequences for public health.

To commemorate the 60th anniversary of the UDHR, the Johns Hopkins Bloomberg School of Public Health and the New York Academy of Sciences cosponsored a conference on December 5, 2008. Michael J. Klag, dean of the Bloomberg School, welcomed over 150 participants to the Academy's conference center in downtown New York City where speakers discussed the human rights challenges that compound public health concerns both at home and abroad.

Much progress ... so much more to be done

"While impressive progress has been achieved during this time, old and new forms of discrimination and exclusion, as well as violations of civil political, economic, social, and cultural rights persist," Navanethem Pillay, United Nations High Commissioner for Human Rights, said in her keynote address. She stressed that all human rights must be addressed as an indivisible, interdependent whole. Economic, social, and cultural rights cannot be fully achieved where civil and political rights are curtailed, and vice versa. The full enjoyment of many other human rights depends on the realization of the right to health. This includes adequate access to goods, services, and facilities, not just in case of illness or emergency, but in the normal life cycle of an individual.

Although the UDHR itself is not a binding legal treaty, it has given rise to human rights provisions in the laws of many countries, and its principles are embodied in subsequent conventions and treaties, imparting legal obligations on party states. In particular, Pillay said, the 1966 International Covenant on Economic and Social Rights is of crucial importance. The covenant, which the U.S. has signed but not ratified, recognizes "the right of everyone to the enjoyment of the highest attainable standard of physical and mental health", and requires party states to take action to achieve full realization of the rights espoused in the covenant.

Under international human rights law (IHRL), the right to health includes freedoms (e.g., the right to be free from nonconsensual and uninformed medical treatment, medical experimentation, forced HIV testing, and degrading treatment) and entitlements (e.g., the right to a system of prevention, treatment, and control of disease, access to essential medicines, reproductive healthcare, and education to prevent unhealthy or risky behavior). IHRL does not prescribe how health care should be delivered; rather it calls for a public heath system that guarantees services are available to all, especially the poor, vulnerable, and marginalized. According to the UN Committee on Economic, Cultural, and Social Rights, public health facilities, goods, services, and programs must be: (a) available; (b) accessible, both physically and financially; (c) acceptable, i.e., gender sensitive, confidential, culturally appropriate; and (d) of good scientific medical quality.

"A world that is greatly out of balance in matters of health is neither stable nor secure."

Progress in health is at the core of most of the UN Millennium Development Goals. "A world that is greatly out of balance in matters of health is neither stable nor secure," Pillay said. Ensuring the right to health is not charity. National health policies should reflect international legal obligations, and an accountability system is needed to translate the right to health into tangible and measurable national standards. Pillay noted that some of the positions taken by the UN and WHO have recently been challenged and there is some controversy regarding the extent of states' legal obligations.

Pillay called upon health professionals to become more active in countering discrimination by, for example, providing simple, accurate information to users of health services, using technology to reduce information and knowledge gaps, and prioritizing research and development in areas where the poorest are left unprotected, such as neglected tropical diseases. Protection of patient privacy, confidentiality, and dignity, and ensuring informed consent prior to any intervention, are also paramount.

Pillay noted that the vast majority of health professionals do adhere to the highest ethical standards, but some are complicit to violations, knowingly or not. Political economic, cultural, and social pressures, as well as personal views, can influence the day-to-day care decisions of a health professional. Pillay stressed that decisions made by health professionals can mean the difference between protection and violation of human rights. She also noted that health professionals and scientists often find themselves under threat, forced to commit violations by societal or state pressure, or find themselves suffering severe consequences for defending their patients' rights or the common good. Health professionals need human rights training, as well as access to independent judicial systems and avenues for redress to protect their own human rights. Pillay concluded by urging all to join in a concerted effort to ensure that human rights remain at the core of the global health agenda.

Challenges around the world: local crises, global consequences

Session moderator Laurie Garrett of the Council on Foreign Relations introduced the concept of "R2P," the Responsibility to Protect. R2P is a relatively new instrument that invokes the "right of humanitarian intervention," basically, protection by force of people at risk in another state. Garrett cited the aftermath of Cyclone Nargis in Myanmar as an example of a public health crises having impact generally limited to the people of a particular country, and the melamine contamination of milk in China as an example of a health situation that can quickly have global health consequences. It's still not clear if R2P is a working principle, if it could be used to ensure the right to health, or what the threshold to invoke it would be.

While entitlements and accountability can be costly to implement, freedoms and obligations offer opportunities for immediate, cost-effective actions, said Joseph Amon of Human Rights Watch. Some barriers to health and human rights have nothing to do with resources—for example, government tolerance of violence against a particular group, such as gay men. Simply enforcing the laws already on the books could begin to address these barriers. Amon also discussed government obligations versus the role of private donors, who in some cases provide more money for aid than the governments. This can present a conundrum for international donors who want to provide assistance, but in doing so must turn a blind eye to the structural and political issues that created the need for aid in the first place. Garrett noted that in some cases the donors offer aid but only under certain conditions. Amon said that governments must assure that the conditions of the aid are consistent with their obligations under human rights law.

Ellis Rubinstein, president of the New York Academy of Sciences, noted that it is not enough to create health infrastructure. Trade policy, nutrition, food supply, basic education, and connectivity/communications technology all have tremendous impact on health. He also expressed concern that while individual researchers are adept at global collaboration, universities need to work with each other more effectively to address public health concerns.

Some governments hide behind "customary and indigenous practice" as cover for their half-hearted attempts at advancing human rights, said Ruth Wedgwood of Johns Hopkins University, and most women around the world are governed by customary practice. She also highlighted the need for capacity building, noting that many countries cannot produce statistics on health and simply do not know the scope of their own problems.

Garrett challenged the panel to consider how the right to health can be enforced, noting that WHO has data on countries that have clear human rights violations, but cannot release that data publicly. Amon said that negative media attention can be very effective in getting governments to act. Rubinstein said that communications made possible by mobile networks and the Internet have enhanced issue transparency and health information exchange worldwide, and Wedgewood stressed the need for freedom of the Internet noting that there are may countries that control access to content.

Struggles at home: ensuring access, ending torture

People fall into two basic rights groups, said Robert Lawrence of the Bloomberg School of Public Health. People in need are rights holders; those providing services are duty bearers. What, for example, is the duty of the City of New York to provide access to high quality public education, or to require nutrition labeling of fast food? "Structural violence" is a concept used to describe when government, through its policies, fails to create an enabling environment, resulting in structural inequities and the inability of some people to meet their basic needs. While not everyone will end up with equality in health, Lawrence said, we need to strive for policies that ensure everyone has equal opportunity for access to social determinants of health.

In the U.S. there has historically been a false dichotomy drawn between health and human rights, said Gara LaMarche of the Atlantic Philanthropies, categorizing health or education as "good things", and civil rights, freedom of the press, or due process as rights. He noted that the U.S. mindset has been changing in recent years, and cited President-elect Obama's comment in a debate that healthcare should be a right for every American, a real break from the conventional political view.

Moderator Patricia Gatling of the New York City Commission on Human Rights then set the panel off in a more unsettling direction: physician participation in torture. Leonard Rubenstein of Physicians for Human Rights said there is no such thing as "torture lite." The "milder" methods, such as isolation or sleep deprivation, can have devastating impacts. Nor is there such a thing as "a little bit" of torture, he said, and torture begets torture, with actions expanding beyond "authorized" practices. Health and science have been corrupted by torture, Rubenstein said, with the government cherry picking theories and data to justify actions, attempting to change ethical standards to enable psychologists and physicians to participate, saying that "first do not harm" only applies to clinical treatment, and not intelligence activities, and having doctors treat torture victims only so they can be further tortured.

LaMarche urged physicians to be advocates for health and human rights, noting that physicians are perceived as highly credible and can bring recognition to human rights issues. Rubenstein added that human rights training needs to be an integral part of the curriculum for all health professionals.

Next steps: building the evidence base, training the advocates

Eager to help those in need, some groups are calling for depoliticizing aid. But separating humanitarian efforts from human rights, said Chris Beyrer of the Bloomberg School of Public Health, leads to bad public health outcomes and prolongs regimes that are the root cause of that suffering. The cholera epidemic in Zimbabwe, for example, is something we are all eager to respond to, he said, but we have to be mindful of the fact that this is a health emergency that is entirely manmade, a result of policies, fraudulent elections, and the failure of the international community to assist Zimbabwe's citizens in achieving democracy.

In his closing comments, Beyrer offered the following for consideration. First, we need to increase understanding of human rights issues and the impact of our research, programs, and policies on human rights. He noted that at Hopkins, bioethics training is mandatory, but human-rights training is not. Second, we need to build the scientific evidence base for rights-based interventions. Advances in technology can be employed to assess the impact of human rights interventions on health, and the negative outcomes associated with violation of human rights. Finally, Beyrer concurred with the need for advocacy, noting that rights have rarely been respected, protected, and fulfilled out of unprompted good governance. Gains are most commonly made by sustained advocacy efforts and we need to train health professionals to be effective advocates. It's not easy to engage in advocacy, and it's very difficult to fund, he said, but it's an essential part of making advances. Beyrer concluded, suggesting that if the new U.S. administration is indeed going to embrace health as a right, now is the golden opportunity for advocacy.