04.19.17

“Speaking truth to power:” a call for praxis in human rights

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This message was written by Alicia Ely Yamin, O’Neill Institute Director, Health and Human Rights Initiative and originally published by Open Democracy. Any comments or questions can be directed to aey7@law.georgetown.edu.

While conservative populist nationalism surged in the last year, I do not agree that its ascendance was inevitable. But I do believe that the human rights community writ large—from North and South alike—must grasp this opportunity to turn to a praxis grounded in struggles against abuses of power, of all sorts. The word “praxis” suggests the need to connect philosophical ideas and theory with real-life experience and action in the political world, yet there is a tendency at this time to be defensive or critical of the human rights discourse, and neither of these positions fully captures empirical realities. There are equally tendencies to argue that the way forward is to focus on national, grass-roots movements or, alternatively, to reinforce a rules-based internationalism. I do not pretend to know—or even think that—there is a single path forward. But I do fervently believe that the justified alarm around recent events provides an opportunity for profound reflection on human rights theory and practice that cannot be wasted.

Marx famously said that he was not interested in understanding the world but in changing the world. But now more than ever, we need to understand the world in order to change it, if we are to have any hope of seeing “a social and international order” where everyone can effectively enjoy their human rights. Human rights are, or should fundamentally be, about the regulation of power—as shields from tyranny in the public square and private bedroom; as curbs on public lassitude and private greed that undermine social justice; but also, and urgently, as challenges to the structures of thought that also drive patterns of suffering and indignity across the globe. Over the decades, promoters of human rights pushed the bounds of human and governmental agency; re-interpreted norms in light of different populations’ experiences; showed the porousness and arbitrariness of divides between the public and private, and between the political and economic realms in the traditional “liberal state”; and created institutional frameworks and procedures at national and international levels. Throughout, the single most important source of human rights consciousness and energy has come from the diverse people who have been affected by, and collectively struggled against, what Paul Farmer has elegantly termed “pathologies of power.”

Yet the nature of power abuses that rights seek to confront has evolved. Struggles against “traditional” oppression and brutality, as well as in defense of democratic institutions, clearly remain pressing. But it is also true the international order for which post-War institutions were built is now “the global order”. And a global elite, which conservative nationalists cynically decry for their own interests, has captured this global order. Indeed, neoliberalism has become a hegemonic form of organizing the world, as well as our collective consciousness.

When everything from health care to genetic information is commercialized, and everything from romantic relationships to politics (the epitome of this being Trump) to the public square itself (as in Facebook) becomes a marketing opportunity, meaning is hollowed out. When decisional autonomy is reduced to “consumer choice,” it degrades the idea of what being human means. And human rights depend, more than anything else, on this simultaneously inter-subjective and collective idea of humans as subjects of reason and conscience, members of a polity, and agents of change.

When rights are no longer “the magic wand of inclusion and exclusion, of visibility and invisibility, of power and no power… the marker of our citizenship and our relation to others” that US black feminist scholar Patricia Williams so eloquently described, we need to understand not just why but also what to do. We cannot confront hegemonic power the same way as we have historically confronted domination; as French critical theorist, Henri Baudrillard argues, hegemony is fought not from the outside in but the inside out.

Thus, it is not surprising that responses to this alienating and exclusionary discourse of modernity are fundamentally anti-modernist—from radical Islamic groups to the Christian fundamentalists who mix racist and misogynistic aspirations with legitimate economic frustration in the US and seek to sow uncertainty, chaos and violence to undermine the existing order at national and global levels. Nor is it surprising that in place of the pluralist constitutionalist visions modernism offered, human identity for these groups is reduced to a series of binary adjectives untethered to the complexity of reality—white/black, Christian/Muslim, immigrant/citizen, gay/straight, male/female, etc.

So, what can we do in the human rights community? Of course many in this diverse community are already engaged in collective reflection, as this forum attests. But I believe that we must reach across silos as well as across North/South and academic/activist divides to be able to more effectively deploy rights frameworks and tools to subvert the forms of hegemonic power that so pervasively colonize our consciousness.

The power of hegemony lies in the acceptance of the inevitability of a given set of social structures and processes, to the point where they cease to be seen as mutable political arrangements and become the “way things are”. Speaking truth to power requires that the human rights community stand outside the magical circle of belief about the neoliberal understanding of the progress in the world. The ever-greater abdication of responsibility by states (and some institutions of global governance) to private actors, is, after all, a political stance about the role of markets in allocating social goods, and the meaning of accountability. It’s not a neutral quest for greater efficiency and innovation.

The way in which knowledge and systems of knowledge are (re)produced can, however, be more subtle. For example, the creation of human rights indicators, has been driven by the very real need to go beyond the symbolism of norms and capture policy efforts and outcomes, especially in economic and social rights. Yet the recent exponential surge in the adoption of such indicators (often quantitative and synthetic, meaning combining two or more measures), by donors, governments and global institutions suggests that only what gets counted, counts.

The goal of enabling objective cross-country comparisons appears naturally desirable, reasonable and neutral. Nonetheless, it is precisely the abstraction from social context—and therefore from complexities such as what legal norms imply in different societies, the meaningfulness of participation and other process concerns—that can cause these crystallized metrics to sometimes obscure more than they reveal about the power dynamics at play. Rather than better capturing reality, such indicators may well come to define reality. And over-reliance on such technocratic exercises may well undermine our consciousness of the need to struggle against the structural obstacles within countries and in the global order.

The human rights community has already developed methods to identify harmful gender stereotypes or inadvertent discrimination, along with criteria for assessing and making inequity in policy and budgetary efforts visible. Now, it needs to develop a praxis for exposing and disrupting the discourses that structure our collective imaginations, as well as destabilizing neoliberal paradigms that impoverish our conceptions of development, democracy, and the meaning of being human.

Posted in Uncategorized;

04.16.17

Hunger, Health, and Compassion – and Our Responsibility

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Famine has already been declared in parts of South Sudan, and threatens Somalia, Yemen, and Nigeria. Map courtesy of Al Jazeera.

This piece was written by Eric Friedman and Lawrence Gostin. It is an extended version of Prof. Gostin’s JAMA Forum posting from April 12, 2017.

The contrast must have been enough to send a shiver down the spine of the global humanitarian and human rights communities. Even as headlines warned of 20 million people in Africa and the Mideast facing starvation, the Trump Administration was proposing steep cuts in foreign assistance.

While the drastic cuts are likely not come to pass, as Senate Majority Leader Mitch McConnell has made clear, American values of compassion and caring are being eroded. Secretary of State Rex Tillerson warned other countries to provide a larger share of assistance, suggesting a U.S. retreat. Perhaps in a sign of what is to come, in the first quarter of 2017 US contributions to humanitarian appeals decreased by one-third from the level for 2016 (from 30% in 2016 to 15% in 2017 as of the end of March 2017, since increasing to 20%). And even small cuts to humanitarian assistance are more than the world’s most desperate people can afford, with UN humanitarian appeals already routinely underfunded.

The consequences of less funding would likely be measured in untold thousands, perhaps hundreds of thousands, of avoidable deaths. There is another path, though: an international community that uses a public health crisis to mobilize political will and sustainable funding. Rather than weakening the United Nations, the United States should help enhance its capacities. The United Nations needs a major influx of funds for food, clean water, and other humanitarian relief, and for protecting its staff and supply lines when delivering aid within conflict zones.

A hunger crisis of historic proportions

The current hunger crisis encompasses South Sudan, Yemen, Somalia, and northeastern Nigeria, all experiencing severe droughts. Yet the disaster’s primary drivers are armed conflicts and outright war. Health risks extend well beyond starvation, with waterborne illness such as cholera, a major threat. This is the largest humanitarian crisis since the United Nations came into existence.

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Posted in Global Health, Human Rights; Tagged: , , , , , , , , .

04.13.17

Direct to Consumer Genetic Testing: Risks and Opportunities

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Accurate genetic testing stands to transform modern medicine by offering effective, personalized treatment. Last week, the U.S. Food and Drug Administration (FDA) authorized marketing of the first direct-to-consumer (DTC) genetic health risk (GHR) tests. Individuals in the US can now purchase DTC tests and gain potentially useful information on their genetic predisposition to 10 diseases or conditions, such as late-onset Alzheimer’s or Parkinson’s disease.

The stated aim of DTC tests is to help individuals to make decisions about their health and support informed treatment. The FDA authorized tests indicate individual risk of developing conditions like Parkinson’s disease, Late-onset Alzheimer’s disease, Celiac disease, Alpha-1 antitrypsin deficiency, Early-onset primary dystonia, Factor XI deficiency, Gaucher disease type 1, Glucose-6-Phosphate Dehydrogenase deficiency, Hereditary hemochromatosis, and Hereditary thrombophilia. Individuals will be able to gain direct access to personal genetic risk information by purchasing the kits over the counter. They then send a saliva sample to the company, and after 6-8 weeks receive the results to their inbox.

Despite past concerns about the reliability of DTC tests, the FDA has now approved specific tests for sale as medical devices on the basis of scientific literature that established a link between specific genetic variants and each of the 10 health conditions. Still, they are not “diagnostic” tests, instead the results indicate genetic risk, not whether one has or will develop a disease. The results do not take individual lifestyle factors into account, meaning that their reliability will vary.

The Right to Know

23andme promotes the tests as “intended to inform users of lifestyle choices and/or encourage conversations with a healthcare professional”.[1] Ideally, individuals will make positive health choices based on their results and as a result, general health and wellbeing will improve, thereby bringing down the cost of treatment and insurance. Yet, this premise assumes that we make rational decisions based on available information. An opposing body of research argues that individuals tend not to make decisions based on long-term health.[2] Clearly, we already know that, for instance, eating vegetables and engaging in physical activity are associated with better health outcomes, yet we often go against health advice.

Risks

Traditionally, genetic tests have only been available through healthcare providers, who should ensure that the individual is provided with adequate support should the results confirm a susceptibility to a particular disease. By cutting out the so-called middle man, individuals affected by their results may have to address the personal ramifications without professional support. Furthermore, individuals may misinterpret a susceptibility to mean that they will develop a particular disease. Another factor is whether individuals will communicate their results to their primary care providers, and whether healthcare professionals are adequately trained to provide tailored medicine based on these results.

Should individuals be able to independently access information on the risk of developing genetic diseases? As the tests do not diagnose an individual with a particular condition, there is a risk that they will needlessly lead to worry and anxiety about a condition that may not develop. A further question is what should we do with information on genetic susceptibility? Could the information that one doesn’t carry a genetic risk encourage unhealthy behavior? Indeed, these tests may increase unnecessary doctors’ visits, thereby increasing healthcare costs. Further, while one family member may feel they have a right to know, others may not want this type of information. Also, the manner in which family members communicate these risks to each other may cause unintentional distress. However, it should be noted that there is little evidence that DTC genetic tests have long-term negative psychological impacts.[3]

Still, in 2004, the American College of Medicine Genetics Board of Directors advised against direct to consumer genetic testing:

“Potential harms include inappropriate test utilization, misinterpretation of test results, lack of necessary follow-up, and other adverse consequences”[4]

In 2015, the Board updated its position to encourage minimum requirements for genetic testing such as: adequately accredited laboratories should be used to process the results, a genetics expert should advise consumers on the implications of the results and privacy concerns must be adequately addressed.[5]

Finally, there is a risk that GHR promotes inequity as only those with sufficient means will be able to access the information.

Legal Protections

US law provides certain protections from discrimination based on genetic information. The Genetic Information Nondiscrimination Act of 2008 (GINA) protects individuals from discrimination on the basis of their genetic information in relation to health insurance and employment.[6] Under GINA, employers are prohibited from refusing to hire, or from firing any employee, or otherwise discriminating due to genetic information. Employees must not be deprived or treated in such a way that would adversely affect their status as an employee.

Also, usually employers cannot request or require genetic information. However, there are certain exceptions, including if health or genetic services are offered as part of a work wellness program. Indeed, Congress is currently considering a bill – the Preserving Employee Wellness Program Act – which would allow employers to penalize employees that don’t join workplace wellness programs that collect health and genetic data.[7] As workplace wellness programs are often operated by third parties, there is a risk that such companies may sell employees’ genetic data without informed consent.[8] Further, GINA does not apply to life, disability and long-term insurance, although certain states restrict the use of genetic information in determining coverage.[9]

Conclusion

Genetic testing is certainly here to stay. Greater genetic awareness and information could encourage patient mobilization and demands for personalized medicine. 23andme is the world’s largest bio/databank and individuals are given the option to donate samples. So beyond individual information, research breakthroughs may be on the horizon should individuals choose to donate their samples for further study.

 

 

 

 

 

 

 

[1] https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpcd/classification.cfm?ID=2969

[2] http://knowledge.wharton.upenn.edu/article/the-key-to-making-smarter-long-term-decisions/

[3] https://www.ncbi.nlm.nih.gov/pubmed/26677835

[4] https://www.acmg.net/StaticContent/StaticPages/Direct_Consumer.pdf

[5] https://www.acmg.net/docs/ACMG%20Revised%20DTC%20Statement%20AOP%20Dec%202015.pdf

[6] https://www.eeoc.gov/laws/statutes/gina.cfm

[7] https://www.congress.gov/bill/115th-congress/house-bill/1313/text

[8] https://www.statnews.com/2017/03/10/workplace-wellness-genetic-testing/

[9] https://www.genome.gov/10002077/

Posted in FDA, Non-communicable diseases;

04.12.17

Colombia Orders Sweetened Beverage Commercial off the Air

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This post was written by Andrés Constantin. Andrés is an Adjunct Professor of law at Universidad Torcuato Di Tella. Any questions or comments can be directed to aconstantin@utdt.edu.

On September 7, 2016, the Colombian Industry and Commerce Superintendence issued a resolution according to which it ordered the Asociación Colombiana de Educación al Consumidor (EDUCAR) to immediately cease broadcasting a TV commercial related to the consumption of sugary drinks, alluding in the order to their adverse effects on health. Moreover, it ordered EDUCAR to submit for approval any commercials that would like to broadcast in the future regarding the consumption of sugary drinks.

The resolution was vastly condemned as a blatant violation of national and international norms protecting the freedom of expression, which obliges to provide clear and truthful information for the protection of health.

Fortunately, on April 5th 2017, the Colombian Supreme Court of Justice ruled in favor of the tutela filed by several NGOs, including Dejusticia and other organizations from the Alianza por la Salud Alimentaria in defense of the right to free access to information.

In particular, the Court recognized the right of consumers to “access information on the positive and negative consequences that consuming a particular product may have on their physical and mental integrity”. Furthermore, it held that consumers “are not passive users but deliberating citizens, who, in meeting their vital, social and commercial needs… have the right to demand, receive and impart information and ideas about the risks to which their health may be exposed”. Additionally, the Court stressed that “the State incurs a violation of the obligation to respect when there is a deliberate concealment or misrepresentation of information that is of fundamental importance for the protection of health”.

This ruling is of special importance to the region since one of the main risk factors that underlie the occurrence of non-communicable diseases (NCD) is the unhealthy diet, which includes particularly “sugary drinks” and, according to the Pan American Health Organization, NCDs “are the leading case of morbidity, mortality and premature mortality in the Americas”. Moreover, Goal 3 of the Sustainable Development Goals (SDGs) urges States to “ensure healthy lives and promote well-being for all at all ages” and seeks to “reduce by one third premature mortality from non-communicable diseases through prevention and treatment” by 2030.

Posted in Global Health, Health reform, Human Rights, Uncategorized; Tagged: .

04.06.17

NEW O’NEILL INSTITUTE REPORT EXAMINES THE IMPORTANCE OF THE RYAN WHITE HIV/AIDS PROGRAM FOR PROTECTING AND ADVANCING HIV PUBLIC HEALTH GAINS DURING HEALTH SYSTEM REFORM

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This post was written by Sean Bland and Safura Abdool Karim, a 2017 Global Health Law LL.M. Candidate at Georgetown University Law Center.

On March 24, 2017, Jeffrey S. Crowley and Sean Bland of the O’Neill Institute for National and Global Health Law and Connie Garner of Foley Hoag LLP released a new report, “The Ryan White HIV/AIDS Program: Protecting and Advancing HIV Public Health Gains During Health System Reform.” Although the HIV no longer dominates headlines as it once did, it continues to affect many people within the United States. The Ryan White HIV/AIDS Program is an integral part of ensuring that Americans living with HIV have access to treatment and the support they need. Given the current uncertainty about the future direction of the United States (US) health system, effective continuation of the Ryan White Program is critical to ensuring we maintain all the progress made against the HIV epidemic thus far.

How does the Ryan White HIV/AIDS Program work?

The Ryan White HIV/AIDS Program is a federal program that provides medical care, prescription drugs, and support services to more than a half a million uninsured and underinsured people living with HIV/AIDS in the US. Although most Ryan White clients (80% in 2015) have some form of insurance coverage, the Ryan White Program affords them access to critical and important services that are not covered by their insurance. The program provides models for integrated care that brings together physical and mental health services. It also provides mechanisms to monitor health outcomes and ensures capacity to provide HIV medical care across the country through both technical assistance and funding.

The Ryan White Program operates as a safety net to ensure patients with HIV get access to the medical care and services they need in a cost effective and coordinated manner.

What has the Ryan White HIV/AIDS Program done?

The Ryan White HIV/AIDS Program began in 1990 and was initially an emergency response to the growing HIV epidemic in the US. Since its inception, the Ryan White Program has continued to receive bipartisan support and has been reauthorized by Congress four times. With each reauthorisation, the program has evolved to better respond to the changing HIV epidemic. Although the Program’s authorization has now lapsed, it has continued functioning under its prior authority and has been funded through annual Congressional appropriations. Since the last reauthorization in 2009, there have been meaningful scientific developments. The Affordable Care Act has also expanded insurance coverage to many people with HIV, which has prompted many states to shift the focus of their programs to focus on other issues, including mental health and substance abuse treatment as well as cost-sharing assistance. The role of the Ryan White Program will likely become even more critical as the health system changes.

The Ryan White Program has led to tangible improvements in health outcomes including increasing rates of viral suppression and reducing health disparities. These outcomes have the further benefit of reducing new HIV infections. This is because when people with HIV are virally suppressed – i.e. the amount of HIV virus within their blood is undetectable – they do not transmit the disease to other people. In fact, The Partners of People on ART–A New Evaluation of the Risks (PARTNER) Study, a European observational study of serodiscordant partners (one partner was HIV positive and one was HIV negative), recently found that no transmissions resulted from virally suppressed individuals.

Preventing HIV infections also results in reducing health care costs. The estimated medical cost saved by avoiding one HIV infection is $229,800. In 2014, there were 8,500 fewer HIV infections than in 2008.  That difference in annual infections alone will result in $2 billion in less national health care spending.  If these trends of fewer infections continue, the savings to the nation will grow exponentially. However, these costs are only avoided if people living with HIV continue to achieve viral suppression.

Given evidence regarding the importance of viral suppression in prevention efforts, consideration should be given to how the Ryan White Program could increase population-level HIV viral suppression by leveraging program data to address populations and communities with the most urgent needs. Promoting and expanding access to pre-exposure prophylaxis (PrEP) for HIV prevention is another potential role the Ryan White Program could fulfill in the future. Policy makers could also consider whether there could be a role for the Ryan White Program to be expanded to address other health issues such as Hepatitis C.

Posted in Health reform, National Healthcare; Tagged: , , , , , .

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