Tag: policy making

Bioethics Blogs

In the Journals – May 2017 by Livia Garofalo

Please enjoy the article round-up for the month of May! This post was put together in collaboration with Ann Marie Thornburg.

American Ethnologist

Plant matters: Buddhist medicine and economies of attention in postsocialist Siberia

Tatiana Chudakova

Buddhist medicine (sowa rigpa) in Siberia frames the natural world as overflowing with therapeutic potencies: “There is nothing in the world that isn’t a medicine,” goes a common refrain. An exploration of sowa rigpa practitioners’ committed relations with the plants they make into medicines challenges human-centric notions of efficacy in anthropological discussions of healing. Their work of making things medicinal—or pharmacopoiesis—centers on plants’ vital materialities and requires attention to the entanglements among vegetal and human communities and bodies. Potency is thus not the fixed property of substances in a closed therapeutic encounter but the result of a socially and ecologically distributed practice of guided transformations, a practice that is managed through the attentive labor of multiple actors, human and otherwise. In Siberia, pharmacopoiesis makes explicit the layered relations among postsocialist deindustrialization, Buddhist cosmologies, ailing human bodies, and botanical life.

Annals of Anthropological Practice

Special Issue: Continuity and Change in the Applied Anthropology of Risk, Hazards, and Disasters

Disaster vulnerability in anthropological perspective 

A.J. Faas

In the study of disasters, the concept of vulnerability has been primarily employed as a cumulative indicator of the unequal distributions of certain populations in proximity to environmental and technological hazards and an individual or group ability to “anticipate, cope with, resist and recover” from disaster (Wisner et al. 2004). This concept has influenced disaster research as a means to question how natural, temporary, and random disasters are and focused analysis on the human-environmental processes that produce disasters and subject some populations more than others to risk and hazards.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Speculative Health by Matthew Wolf-Meyer

The last thirty years have seen an intensification in ways of thinking about our health and disease in the future tense. Risk, precarity, subjunctivity — all three point to the ways that temporality shape human experience, subjectively, interpersonally, and institutionally. But what if we turn our attention away from the clinic and its therapeutic technologies — which focus on the unfolding everyday futures of therapy and the modest gains and losses experienced through aging, debilitation, and disease progression — and attend, instead, to the speculative futures of health and disease in science fiction, futurism, and other genres that creatively attempt to think through, conceptualize, and bring into being particular futures? These futures might operate at the level of the individual — different conceptions of the self and subjectivity — and they might operate at the level of society and its institutions, entailing new social orders as well as innovations in current institutions.

In this series we invite contributors to consider how speculation makes particular kinds of persons and social forms possible; to think though other models and modes of speculation about the body, health, and disease — in film, literature, and mass media; to consider how particular technologies and techniques create futures.

Possible topics might include:

–Fictional descriptions of novel social orders and institutions that produce new forms of health and wellness – or create new forms of disease, disability, and disorder

–Ethnographic engagement with emerging technologies of care, attending to the future-making of technologists, medical professionals, and the technology itself

–Historical descriptions of earlier forms of speculations, whether they be in the context of fiction in the strict sense or speculative policy making

–Considerations of how speculative genres come to influence the ways individuals conceptualize the future of health and disease

–Other explorations of how speculation operates, specifically in the contexts of health, wellness, disease, disability, and death

Contributions of 2,000-4,000 words are sought by June 1st, to begin publication by mid-June.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Guest Post: Epigenetics: Barriers to the translation of scientific knowledge into public policies

Written by Charles Dupras and Vardit Ravitsky

Bioethics Programs, School of Public Health, University of Montreal

 

Environmental epigenetics is a rising field of scientific research that has been receiving much attention. It explores how exposure to various physical and social environments (e.g. pollution or social adversity) affects gene expression and, eventually, our health. Environmental epigenetics can sometimes explain why some of us carry increased risks of developing specific diseases. It provides activists a powerful vocabulary to promote environmental awareness and social justice. This new vocabulary, which allows us to discuss the consequences of disparities at the molecular level, has been enthusiastically mobilized as an effective way of stimulating political will for promoting public health preventive strategies.

However, this perspective – that we call the ‘policy translation’ of epigenetics – can be contrasted with a ‘clinical translation’ that targets the development of novel biomedical tools to assess epigenetic risks and reverse a detrimental epigenome. In a recent paper published in The Hastings Center Report, we argue that these two approaches are competing for public resources. We suggest that in Western contexts, the clinical translation of epigenetics may end up being prioritized over the policy translation of epigenetics, to the detriment of efforts to promote policy and public health. We highlight four potential barriers or biases that may impede the ‘policy translation’ of epigenetics, with the aim of cautioning against this scenario.

First, our societies operate under the ‘technological imperative’, a culturally engrained preference for technological solutions. In the context of epigenetics, this means that research findings are likely to be translated into biotechnological innovation that targets individual health.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Brazil calls for "equitable representation from the Social Sciences and Humanities"

Brazil is revising its research ethics standards in ways that will help tailor them to research in the social sciences and the humanities. The standards provide for greater representation by scholars in those fields when policies and decisions are made, and they decenter some of the medical assumptions that had previously governed all research. But they do not go as far as the Canadian TCPS2 in recognizing the legitimacy of critical inquiry.

[Iara Coelho Zito Guerriero, “Approval of the Resolution Governing the Ethics of Research in Social Sciences, the Humanities, and Other Disciplines That Use Methodologies Characteristic of These Areas: Challenges and Achievements,” Ciência & Saúde Coletiva 21, no. 8 (August 2016): 2619–29, doi:10.1590/1413–81232015218.17212016.]

In Brazil, a National Research Ethics Committee (Comissão Nacional de Ética em Pesquisa, or CONEP) oversees each local Research Ethics Committee (Comitê de Ética em Pesquisa, or CEP). As in other countries, medical researchers and health officials have dominated the crafting of policy, resulting in restrictions that make little sense for research in the social sciences and humanities (SSH).

Since 2013, public health researcher Iara Guerriero and other members of a Working Group in Social Sciences and Humanities have labored to improve this situation, and in April 2016 they won National Board of Health approval for their resolution. In her article, Guerriero publishes the resolution and notes four major advances:

  1. Equitable composition of CONEP and involvement of SSH members in reviewing the protocols for these areas.
  2. Recognition that scientific merit must be assessed by competent areas.
  3. Discrimination between the process of obtaining and registering consent.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Tale of the Ethical Neonatologist – And Why There Shouldn’t Be a Legal Right of Conscientious Objection

Doctors have values. These are sometimes described as their conscience. Those values can conflict with what has evolved to be medical practice. Where that practice is consistent with principles, concept and norms of medical ethics, their values should not compromise patient care. The place for doctors to express their values and seek to revise the practice of medicine is at the level of policy and law, not at the bedside. Because conscientious objection can compromise patient care, there should be no legal right to conscientious objection to medical practice that is consistent with medical ethics. Personal values (“conscience”) can be accommodated by employers under standard labour law as occurs in Sweden and Finland, or candidates selected for medical specialties who have values consistent with ethical medicine, or new professions developed to provide those services.

Doctors may have very defensible values. But just because their values are reasonable does not imply they should be accommodated by medicine. Consider the Conscientious Neonatologist.

The Conscientious Neonatologist

Peter is a thoughtful, reflective specialist caring for premature babies in intensive care. He is a vegetarian for 20 years. He became deeply concerned about the welfare of animals during his university years. He believes in “animal liberation”. Neither he nor his family consume meat or use animal products for clothing.

In his job, he must prescribe “surfactant” – a substance to help the lungs of premature babies function better. The standard, and most effective form is derived from the lungs of pigs. However there is a new artificial form. He considers this a more “ethical” product and considers using it in his medical practice.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Politics of HIV

Harry Critchley argues that laws and policies can contribute to the spread or reduction of HIV infections.

__________________________________________

The International AIDS Conference has returned to Durban, South Africa for the first time in nearly two decades. When the conference was last held there in 2000, President Thabo Mbeki shocked attendees by publicly questioning the causal link between HIV and AIDS and walking out during an impassioned keynote address by a young boy born with HIV. In a recent op-ed, South Africa’s health minister, Aaron Motsoaledi, noted that the conference in 2000 marked a low point in the country’s official attitude towards HIV/AIDS—a failure on the government’s part that is estimated to have led to nearly 330,000 premature deaths between 2000 and 2005.

In the intervening years, however, South Africa has experienced a sea change in its approach to HIV, in large part because of greater synergy between government policy makers and the scientific community. The country now operates the world’s largest drug treatment initiative and has seen significant improvements in its life expectancy and newborn infection rates. South Africa is also at the forefront of new prevention, testing, and treatment programs for HIV. The country still faces steep challenges, however. It has the largest population with HIV in the world and struggles with high rates of infection amongst young women aged 15 to 24. Nonetheless, the ambitious ’90-90-90’ UNAIDS global targets for 2020—90% of persons with HIV diagnosed, 90% of those diagnosed receiving treatment, and 90% of those receiving treatment virally suppressed—appear for the first time to be within reach.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Looking Towards 2030 in Patient Safety

There is a clear need for those charged with patient safety policy making to prepare for the future and to take account of emerging trends. This would be so in any commercial or professional organisation. These issues were addressed in … Continue reading

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals, February 2016 Part I by Melanie Boeckmann

This month’s reading list, part I

American Ethnologist

The 2015 Refugee Crisis in Europe: Forum

Representing the “European refugee crisis” in Germany and beyond: Deservingness and difference, life and death

Seth M. Holmes, Heide Castaneda

The European refugee crisis has gained worldwide attention with daily media coverage both in and outside Germany. Representations of refugees in media and political discourse in relation to Germany participate in a Gramscian “war of position” over symbols, policies, and, ultimately, social and material resources, with potentially fatal consequences. These representations shift blame from historical, political-economic structures to the displaced people themselves. They demarcate the “deserving” refugee from the “undeserving” migrant and play into fear of cultural, religious, and ethnic difference in the midst of increasing anxiety and precarity for many in Europe. Comparative perspectives suggest that anthropology can play an important role in analyzing these phenomena, highlighting sites of contestation, imagining alternatives, and working toward them.

Immobilizing mobility: Border ethnography, illiberal democracy, and the politics of the “refugee crisis” in Hungary

Annastiina Kallius, Daniel Monterescu, Prem Kumar Rajaram

In the summer of 2015, more than 350,000 migrants moved through Hungarian territory. Almost immediately there emerged in response a dialectic between, on the one hand, depoliticizing narratives of crisis that sought to immobilize the migrants and, on the other, concrete political mobilization that sought to facilitate their mobility. While state institutions and humanitarian volunteer groups framed mobility in terms that emphasized a vertical form of politics, a horizontal counterpolitics arose by the summer’s end, one that challenged hegemonic territorial politics. The state’s efforts to immobilize resulted only in more radical forms of mobility.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

When People Work Together is Less More or Less (and is More Less or More)?

Written by Andreas Kappes

This is an unedited version of Andreas Kappes’ article which was originally  published on The Conversation

Twitter:@ankappes

Doping in sports often gives us intriguing insights not only into how we think about right and wrong1, but also into our intuitions about performance. In the aftermath of the latest doping scandal, for instance, Arsene Wegner, eminent football manager of Arsenal London, accused the Uefa (governing body of European football) of “basically accepting” doping 2. Arsenal London had just lost to Dynamo Kiev and one player form the Ukrainian team was caught doping. Uefa did not punish the Ukrainians, only the perpetrator. But surely, one doped player makes a team better, gives an unfair advantage to them, right? This intuition reflects how most of us think about performance in groups, not only in sports, but group performance everywhere. More of something that enhances individual performance such as expertise or skill is also more success for the team, and more of something that impairs individual performance such as sleep deprivation or stress means also less success for the team.

My colleague Nadira Faber and her colleagues challenge this basic assumption in a new ground-breaking theoretical article, suggesting that this is not necessarily the case3. Rather, they forcefully argue, each individual performance enhancer and performance impairment has the potential to increase or decrease group performance. This has counterintuitive implications not only for your sports team, but also for science communication and policy making.

Group performance is perplexing. Consider the following examples: Basketball plater Patrick Ewing, one of the best to ever play the game of basketball4, injured his Achilles tendon during the conference finals 1999, the last step before reaching the ultimate goal, the NBA finals.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Member Discussion of Deliberation

Today, the Bioethics Commission is developing recommendations for its work on deliberation and education. After years of modeling the use of democratic deliberation to arrive at solutions to complex and controversial bioethics and health, science, and technology policy questions, the Bioethics Commission is well-situated to make recommendations in this area.

Members discussed three potential recommendations during this session. First, they discussed strongly urging stakeholders at all levels to use democratic deliberation to inform policy decisions in health, science, and technology that have ethical dimensions. The Bioethics Commission’s own deliberations about medical countermeasure research with children serves as a vivid example of this process. In 2013 during their meetings about pediatric medical countermeasures, Members started with many different ideas about how to move ahead, and through effective deliberation, arrived at a path forward that was not only well-received by the key stakeholders, but was also implemented by major players in the field, including CDC and the Biomedical Advanced Research and Development Authority. During this discussion, Members emphasized that well-designed deliberations can help us formulate better answers to bioethical questions that our society can act upon, by pooling intelligence and insight across a range of backgrounds, expertise, and perspectives. Members agreed that this will be an important recommendation to make. Some Members commented that the report should emphasize the specifics and mechanics of how to conduct democratic deliberation, using vivid examples of deliberative processes at different levels, not just at the federal level.

Second, they discussed recommending that those involved in deliberative activities should use available empirical evidence about methods for deliberation, and ensure that deliberative activities are designed and conducted according to best practices.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.