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 May 17, 2017, the Supreme Court of Ohio will hear oral arguments in State of Ohio v. Batista, a constitutional challenge to an Ohio law (R.C. 2903.11(B)(1)), which makes it a felony assault for a persons living with HIV to engage in sexual conduct without prior disclosure of their HIV status. Orlando Batista was convicted of felony assault for failing to disclose his HIV-positive status to his girlfriend before having sex with her and was sentenced to 8 years imprisonment, the maximum allowed under the law. The Ohio First District Court of Appeals affirmed the conviction. The Supreme Court of Ohio granted review of the law and Batista’s conviction and sentence.
Grounds of Challenge
Batista is challenging the law on two grounds. The first is on the grounds that the law violates the Equal Protection Clauses of the Ohio and United States Constitutions. Batista argues that the law is not rationally related to its purpose of preventing the spread of HIV. This is because criminalization does not reduce the rates of HIV transmission and perpetuates out-dated stigma against people living with HIV. In fact, the law criminalizes conduct that carries a negligible risk of transmission such as condom use or viral suppression through antiretroviral treatment. Batista also argues that there is no rational basis for the law to distinguish between HIV and other communicable diseases (such as Hepatitis C). In addition, Batista argues there is no rational basis to distinguish between the modes of transmission of HIV by criminalizing transmission through sexual conduct but other modes of transmission such as sharing needles.
The second ground of challenge is that the law violates the First and Fourteenth Amendments of the United States Constitution because it compels speech and infringes on the right to refrain from speaking. Batista contends that the law constitutes content-based regulations and, as a result, government must adopt the least restrictive means to achieve its purpose. Since the law is broad and encompasses conduct that carries a minimal or non-existent risk of transmission, Batista contends that it is unconstitutional.
The State of Ohio argues that the law does not violate the Equal Protection Clause because because the state has an interest in controlling the spread of HIV and in ensuring consent to sexual conduct. The state also argues that the law does not violate the First and Fourteenth Amendments because the law is only restrictive insofar as it is essential.
Various organizations filed amicus briefs to assist the Supreme Court of Ohio by offering information relevant to the case. The Center of HIV Law and Policy and eight other organizations filed a joint amicus brief. The amicus brief builds upon the two constitutional challenges raised by Batista and raises an additional ground. The organizations argue that the law violates the Equal Protection Clause because it arbitrarily singles out persons with HIV for differential treatment while no other classes of people are required to disclose private medical information prior to sexual conduct. In addition, they argue that the law does not reduce the spread of HIV and promotes stigma against persons with HIV. Finally, they argue that the law violates prohibitions against discrimination on the basis of disability under the Americans with Disabilities Act.
This case may have important implications for the constitutionality of similar laws across the United States. Currently, thirty-two states and two U.S. territories have HIV-specific criminal laws that only apply to people with HIV, and other states use general criminal laws to prosecute people on the basis of their HIV status. Since 2008, there are been more than 260 prosecutions under these laws despite the fact that there is no scientific evidence to support such laws.
This post was written by Laura Malavé-Seda and Rebecca Reingold.
In the summer of 2015, San Francisco established the U.S.’s first Young Adult Court (YAC), which strives to align opportunities for accountability and transformation with the unique needs and developmental stage of eligible young adults, ages 18-25. It acknowledges the fact that “[o]ur traditional justice system is not designed to address cases involving these individuals, who are qualitatively different in development, skills, and needs from both children and older adults”.
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 email@example.com.
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.
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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.
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.
23andme promotes the tests as “intended to inform users of lifestyle choices and/or encourage conversations with a healthcare professional”. 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. 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.
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.
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”
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.
Finally, there is a risk that GHR promotes inequity as only those with sufficient means will be able to access the information.
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. 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. 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. Further, GINA does not apply to life, disability and long-term insurance, although certain states restrict the use of genetic information in determining coverage.
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.
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The views reflected in this blog are those of the individual authors and do not necessarily represent those of the O’Neill Institute for National and Global Health Law or Georgetown University. This blog is solely informational in nature, and not intended as a substitute for competent legal advice from a licensed and retained attorney in your state or country.