05.16.18

A Lack of Consensus around Surrogacy Regulation at the National Level

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Image courtesy of ABAJournal.com

For many years, surrogacy laws around the world have been in flux. Currently, the Canadian Parliament is considering a bill that would repeal the current legal prohibitions against paying for a surrogate. In the UK, the Law Commission of England and Wales and the Scottish Law Commission have announced they will review various laws that regulate surrogacy as part of an effort to speed up the granting of parental orders and deter the exploitation of birth mothers abroad.

Surrogacy remains a hotly contested and complex issue, and there is no consensus on how to regulate it around the world. Can any one legislative approach tackle the many ethical, legal, moral, cultural, religious, etc. tensions that arise in this context?

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Posted in Uncategorized; Tagged: , , , .

05.14.18

Culture change: Not only for distant lands

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When we talk about how cultures need to change, we often think of someone else’s culture. Cultures in regions where women need permission to leave home, or where a husband beating his wife is an accepted practice, or where sexual minorities are shunned and subject to severe sanctions. We think of a country in Asia, Africa, or the Middle East.

All this is true. Practices such as these, even ones that may have may have existed for hundreds of years, are deeply at odds with human rights, with current values such as inclusion, with today’s world.

But we need some cultural changes here in the United States too, including in areas link to two of our country’s hot-button issues: gun violence and immigration.

Image courtesy of Everytown.

One of the arguments used against gun control, particularly regarding national action, is that guns are part of the culture in some of the country, particularly in the West, in the South, in rural America. The link between guns and that rugged American individualism, between guns for hunting – perhaps a father and son activity, or a group of friends joining together in camaraderie – these have deep roots.

But in today’s world, this culture can have deadly consequences. The evidence in plain that gun deaths are higher in states with looser gun regulations and with more guns. School shootings and other gun crimes can happen anywhere. People may attempt suicide anywhere. Wealthy countries that don’t have this culture – and have much tighter gun laws – have only fraction of the gun violence that the United States experiences.

In the area of immigration, the issue is not so much an ingrained part of the culture of America that needs to change, as much as it is accepting that the culture is already changing. One of the factors behind opposition to immigration among some white Americans is a sense that they no longer belong. As National Public Radio reporter Michele Noris reported from a town (Hazleton) in Pennsylvania, once 95% white and now more than 50% Latino:

Going to the doctor’s office and suddenly looking around and realizing that everybody else is Hispanic. Going to the local Walmart … and realizing that, “Boy, the things they’re selling in the produce aisle are different,” or “There’s a whole aisle where everything is in two languages, and I never noticed that before.” … “Suddenly it feels like this community that I knew so well” — so what they were saying is that they don’t feel like it’s “theirs” anymore. …

Image courtesy of CE Units.

Along similar lines, a poll of white working class Americans last year found that 49% of respondents agreed with the statement that “things have changed so much that I often feel like a stranger in my own country.”

Different languages, people who look different, different foods, perhaps people who pray differently – yes, our culture is changing. As we encourage people in deeply conservative regions of the world who see their cultures changing – women holding economic and political positions of power, perhaps, or practices like female genital mutilation and child marriage on their way out – to embrace these changes, so must we do in the United States.

The most effective changes are driven from within the community, not from people on the outside (like me). Rather, just as women’s groups and Muslim organizations are at the forefront of changes for women’s rights and tolerance within deeply conservative societies, the changes at home will be homegrown, from people who have an intimate understanding of the cultures that need to (or are) changing. People from areas where a culture of guns persists, communities with a changing complexion – they will be, and need to be, leaders in driving and accepting these changes.

Those of us on the outside are not powerless. Just as funding women’s NGOs in conservative societies can help enable their leadership to flourish, perhaps we – as individuals, as NGOs, as foundations – could support skills building for people in these communities and regions who want to act, but may need assistance with the skills to do so. Maybe funding from the outside, including from the federal government, could support English-language training for immigrants who so desire – which could both open up new economic opportunities for them and lessen the discomfort of their neighbors, easing the transition.

Accepting that your culture is changing, or demanding that it does change, may be a difficult and not immediate process. Those of us not part of these cultures should try to understand the difficulty of letting go of what you know.

And we should examine whether there are assumptions that we have about our own cultural environments that should change. Just as I am not from, for example, Afghanistan, I am not from the rural South. And while I grew up in a largely white, upper-middle-class New York suburb, and now I live in a mixed-income apartment building in Washington, DC, where my floor has a mix of individuals and families white and black, Arab and Latino – I am among the very many Americans who embrace these changes, who see in them our own values, so it is no burden to me.

Culture change is not easy. But cultural evolution is the way of the world, to conform to evolving values and realities. For the sake of our country, I hope that we can embrace the need for such an evolution here at home.

Posted in Uncategorized; Tagged: , , , , .

05.10.18

Mainstreaming Human Rights across the World Health Organization

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This article was written by Rebekah Thomas, Technical Officer for Human Rights in the Gender, Equity and Human Rights Team at the World Health Organization, and Veronica Magar, Team Leader for Gender, Equity and Human Rights at the World Health Organization.

WHO was founded on the principle that all people should be able to realize their right to the highest possible level of health. ‘Health for all’…is the driving force behind our efforts to urge all countries to make progress towards universal health coverage.

Dr. Tedros Adhenom Ghebreysus
Director-General of the World Health Organization

Over the course of two chapters in the groundbreaking new edited volume, Human Rights in Global Health: Rights-Based Governance for a Globalizing World, we argue that the World Health Organization (WHO) has in recent years begun to operationalize human rights in health through the translation of fundamental human rights principles — participation, equality, non-discrimination, and accountability — and key components of the international standard on the right to health. Looking ahead, we lay out three shifts that will be needed to make these changes sustainable and identify some early positive trends that could pave the way for a new era for health and human rights at WHO.

WHO’s mainstreaming strategy has evolved toward a more integrated approach that encompasses gender, equity, and human rights. Undertaken as part of broader organization-wide reforms, this innovative shift (the first of its kind in the UN system) offered a more efficient, powerful, and unifying concept for human rights mainstreaming and led to a focus on the practical and operational components of human rights to provide a common value system and language across all three fields.

An integrated set of mainstreaming “standards” were developed, derived from international human rights norms, to guide WHO staff on how to incorporate these values into their work. Actions included data disaggregation, participatory processes, non-discrimination, equity and gender analysis, and implementation and follow-up on recommendations of human rights bodies. These standards were formally introduced into organizational planning and evaluation tools, evidence-based guideline development processes, and evidence and data collection; assessment tools were developed to support country health planning and programing.

As these mainstreaming efforts have continued, a more nuanced shift has been taking place across the Organization, with the adoption of strategies firmly grounded in fundamental principles of human rights. Firstly, a growing number of programs — across mental health, violence and injury, disability, sexual and reproductive health and non-communicable disease — are now tracking and monitoring the role of law in promoting public health and protecting human rights. The Organization’s flagship commitment to Universal Health Coverage (UHC) further acknowledges that ensuring affordable health care coverage and tackling the social and commercial determinants of health will be contingent on engaging with other actors in law reform processes.

Secondly, following the adoption of the 2030 Sustainable Development Agenda, attention to, and involvement of, “marginalized populations” — those left behind in the dramatic health gains made under the Millennium Development Goals (MDGs), including the poor, older persons, ethnic minorities, people living with HIV or other health conditions, key populations at risk of HIV, people with disabilities, women, girls and adolescents — is now a guiding principle that must shape all public health policy, including and in particular, UHC reforms. This principle has become so central that it has been proposed as a specific pillar in the Organization’s new five-year General Programme of Work (GPW) for 2019-2023.

Lastly, accountability and advocacy, coupled with the greater participation of non-state actors, has acquired a new prominence in a field traditionally deemed technical, rather than political. Through the global leadership and partnership invested in the United Nations (UN) Secretary General’s Every Woman Every Child initiative, novel accountability tools have emerged such as the Commission for Information and Accountability (CoIA) and the Independent Expert  Review  Group  (iERG), which  have called for stronger and more inclusive national accountability mechanisms. This has been echoed at the international level by calls for greater UN engagement in human rights review processes, a call endorsed in the recommendations of the High-Level Working Group on the Health and Human Rights of Women, Children and Adolescents.

These shifts have occurred against the backdrop of WHO’s flagship initiative on UHC as well as the landmark Commission on Social Determinants of Health, which recognized that health cannot be improved without addressing the underlying social determinants of health. Buoyed by a steadily growing alliance of non-state actors and activists, the discourse around UHC has evolved from being “the most powerful concept that public health has to offer” to being a matter of human rights and one of political choice.

The operationalization of human rights principles into practice has doubtless unearthed as many challenges as it has set new precedents, foremost among which will be ensuring that these practices truly reflect the core values inherent in human rights. Furthermore, WHO’s explicit mainstreaming efforts continue to be limited in scale due to a lack of dedicated financial and human resources at both headquarters and country level. In order to secure this transformation to a more rights-based era, we propose that three further shifts are needed.

Firstly, the organization should transform its constitutional commitment to human rights into a more operational mandate through its governing bodies. A formal governing body commitment to human rights could detail the precise scope and requirements of this commitment using rights-based indicators and provide for interim reporting and accountability toward health-related Sustainable Development Goals (SDGs) through annual reviews to the World Health Assembly. It would send a strong message to WHO staff and external partners that WHO has both a duty and a mandate to support the realization of human rights in public health, securing the gains of the past and acting as a bulwark against the uncertainties of the future.

Secondly, WHO could pursue a more strategic engagement with partners at the intersection of health and human rights, including the UN human rights system, at country and global level. Notwithstanding its unique normative role, there is nonetheless enormous potential for WHO to engage more strategically and supportively with the broad constellation of “human rights mechanisms” — including the Human Rights Council, Special Procedures mandate holders, human rights treaty bodies, and the UPR — to support member states to meet, and report on, their obligations under the right to health.

Thirdly, since evidence drives health policy and decision-making, WHO should support innovative and multidisciplinary research models to better capture the impact of human rights on health and wellbeing, as a key to unlocking deeply entrenched cynicism and resistance to human rights by health practitioners and policymakers. Human rights-based approaches are often long-term, complex, multi-sectoral, and multi-stakeholder. While remaining unequivocal in its support for human rights, WHO should continue to lobby and invest in participatory and qualitative research into the impact of human-rights-based interventions for health.

The shifts described above — both the explicit mainstreaming strategy and the more implicit shaping of health policy and programming — have the potential to profoundly reframe the importance of human rights in global health, and to engineer the kind of “culture change” that is needed to put rights at the center of WHO’s work. Steadfast leadership and commitment will be necessary for this culture change to occur. WHO’s new Director-General, Dr. Tedros Adhanom Ghebreyesus, has made clear his determination to rise to this challenge. As inequalities continue to grow globally, pandemics become yet more globalized, and the world faces unprecedented population growth, humanitarian disaster, migration, climate change, and dramatic epidemiological shifts from communicable to chronic diseases, the expectations for what the Organization can and should do have never been greater. A firm commitment to human rights by the world’s “global guardian of public health” has never been more crucial.

Read more about the World Health Organization’s efforts to mainstream human rights in:

Human Rights in Global Health: Rights-Based Governance for a Globalizing World (2018)
available from Oxford University Press or Amazon.com

Posted in Global Health, WHO;

05.10.18

The Changing Relevance of Material Transfer Agreements for Infectious Disease Research

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By Sam Halabi and Michelle Rourke

Image credit: @alexandraphelan

 

 

 

 

 

 

 

On May 3 and 4, 2018, the O’Neill Institute for National and Global Health Law hosted experts from academia, government, the World Health Organization and the private sector to discuss the changing relevance of Material Transfer Agreements (MTAs) for infectious disease research.

Material Transfer Agreements tend to elicit little excitement from practicing lawyers but the mere mention of MTAs has the power to induce an instant and profuse cold sweat in scientists!

Material Transfer Agreements are usually standard form contracts that accompany the transfer of research materials from one set of researchers (who may be affiliated with either public or private laboratories) to others. They outline how the materials can and cannot be used by the recipient: whether they are allowed to pass those materials on to third parties, whether they can claim intellectual property rights over anything created using those materials and how the recipient is to store or dispose of the materials after their use.

The use of an MTA is common for proprietary materials like cell lines, engineered plasmids or enzymes. But these contracts are starting to accompany the transfer of infectious disease agents, like bacteria and viruses, that have not undergone any innovative or transformative steps to make them any different to the form in which they existed in the environment or host organism. Pathogens were once openly shared between scientific networks of colleagues and friends, but they are starting to attract claims of ownership and national sovereignty. Thus, the MTA is becoming ever more pervasive and scientists must now participate in the negotiation process to access infectious disease samples on which to conduct their research!

This issue is particularly salient during epidemics and pandemics. During the course of a health emergency, pathogens will undergo genetic changes: mutating and evolving as they traverse their hosts. Understanding these changes, for example, allowed researchers to determine early on that in 2014, the Ebola outbreak originated in Guinea and traveled to Sierra Leone through human hosts, not vice versa or through another host species like bats.  Scientists must secure access to up-to-date samples of pathogens to generate the data necessary to inform the public health response. Delays in obtaining samples can have disastrous consequences.

The Conference, convened by Professors Sam Halabi and Rebecca Katz, and supported by the National Institute of Allergy and Infectious Disease (NIAID) of the National Institutes of Health (NIH), addressed various facets of obtaining and transferring infectious disease materials for infectious disease and public health research, including:

  • The commodification of genetic resources, including pathogens;
  • The international regime on access and benefit-sharing (ABS) under the UN’s Convention on Biological Diversity and its Nagoya Protocol on Access to Genetic Resources and the Fair and Equitable Sharing of Benefits Arising from their Utilization;
  • The physical, biosafety and regulatory obstacles to accessing pathogens and negotiating MTAs;
  • Special considerations for collecting pathogen samples from human subjects;
  • Ethical considerations when conducting infectious disease research in developing countries; and
  • How MTAs are shaping research practices in the biological sciences.

The Conference succeeded in creating a forum where researchers, lawyers, and ethicists could discuss material transfer issues outside of the specific siloes where they are normally determined (always with imperfect information).  World Health Organization representatives discussed the particular perspective of MTAs within the international agreements it oversees with researchers affiliated with governments, development agencies, industry, and scientific societies.  Similarly, researchers from different arms of the U.S. government (and the perspectives imposed by their specific mandates) could explore with non-governmental researchers what issues they encountered in trying to develop diagnostic tests, therapeutics, and vaccines.

The outcome of the meeting will be a more comprehensive and better informed survey instrument to appreciate in a broader and more generalizable way what scientists and policymakers must understand about materials, their transfer, and each other in order to facilitate the research process in light of new norms about access and benefit-sharing.  The presentations will also be published as an edited volume and future meetings planned with an even wider range of stakeholders.

Posted in Global Health; Tagged: .

05.09.18

The Mental Health Implications of Gender Discrimination in the Workplace

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image: the Chronicle

To anyone who has experienced gender or other forms of discrimination, in the workplace or outside, it is likely unsurprising that pay disparity—one of the clearest markers of discrimination –is linked with anxiety and depression. In addition to pay discrimination on the basis of gender, other manifestations of workplace discrimination include discrimination in hiring, promotion, and having disproportionate numbers of one sex in positions of power and leadership roles. There are also extremely egregious, as well as more subtle types of gender discrimination. The #metoo movement and related disclosures of rights violations has drawn attention to pervasive sexual assault, harassment and gender discrimination in the workplace and beyond, as well as the widespread impunity around such cases. Such rights violations are especially egregious in cases where power dynamics in predominantly male-controlled work places are used to exploit subordinates and perpetuate cycles of violence, harassment and discrimination; in such environments, victims often lack meaningful accountability mechanisms.

More subtle manifestations of discrimination may significantly impact the everyday lives of women and gender minorities, the compiling effect of which may result in unrepentantly hostile work environments. ‘Mansplaining’—and the fact that there is need for such a term—is an excellent example. “Mansplaining” describes the phenomenon that some individuals, including myself, have experienced where one explains something “without regard to the fact that the explainee knows more than the explainer,” which is often done by a man to a woman. Another example is assigning more ‘critical’ assignments to men which are more likely to advance their careers while assigning ‘lesser’ roles to women. Other forms include utilizing aggressive techniques, coercion, and power dynamics to pressure persons into doing a task. Such use of power dynamics is not dissimilar from circumstances often reported in the context of sexual assault cases and often underscores entrenched misogyny and/or undervaluing of women.

Gender discrimination remains pervasive in many countries. In the United States, women still earn only 82 cents for every dollar earned by men. However, if additional factors are taken into account, the statistics are even more grim. The World Economic Forum Global Gender Gap Index, which not only covers salaries, but also workforce participation and leadership in the economic pillar, found that in the U.S., women’s average income as a percentage of men’s was approximately 64.8%. Concerningly, the Global Gender Gap Index found that in 2017, gender inequity is widening, not closing.

Gender discrimination and pay disparity is not only inherently wrongful, illogical and in direct violation of international human rights law and constitutional and legal protections in most countries, but also has serious mental health implications for those suffering from it. A 2016 Columbia University study found that women who made significantly less than their male counterparts (controlling for age, education, profession, among other factors) were four times more likely to suffer from anxiety and 2.4 times more likely to suffer from depression. Importantly, these findings held true at high income levels (i.e. for executives), meaning that negative mental health implications of pay disparity were not solely related to poverty or inadequate resources. Other studies have also shown that perceptions of gender discrimination harm physical and mental health.

One researcher poignantly explained that a combination of factors likely contribute to the correlation between pay inequality and poor mental health stating, “[t]he wage gap represents so much that is unseen.” Indeed, the wage gap, and all it represents, not only illustrates that there is insufficient political and workplace will to tackle this issue, but underscores that many workplaces simply value women and their work contributions less than their male counterparts. It should not be surprising that victims of discrimination suffer from poor mental health outcomes upon realization that they are considered lesser humans than their colleagues, that their governments and employers have failed to protect their rights. However, it is quite shocking that inequality remains so inadequately prevented and addressed despite all the evidence of its harms.

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

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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.

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