Tag: social sciences

Bioethics Blogs

In the Journals: February 2017 by Christine Sargent

American Ethnologist

Good ramps, bad ramps: Centralized design standards and disability access in urban Russian infrastructure

Cassandra Hartblay

Accessible design seeks to reconfigure the social by restructuring the material. As the idea moves globally, it becomes entwined in local logics of moral obligations between citizens and the state. Wheelchair users in the city of Petrozavodsk, in northwestern Russia, talk about inaccessible infrastructure as being embedded in moral relationships. In their stories, hierarchies of expertise diffuse responsibility for outcomes and devalue user knowledge. When accessible design elements are installed to meet minimum standards, they are “just for the check mark” and often do not “work.” Wheelchair ramps produce value for businesses or governments by representing an idea of access that circulates as a commodity. Failed accessible design draws attention to a moral field governing the responsibilities of actors to produce a “good” built environment, imbricated in teleologies of progress. [disability, design, infrastructure, access, ramps, postsocialism, Russia]

Self-governance, psychotherapy, and the subject of managed care: Internal Family Systems therapy and the multiple self in a US eating-disorders treatment center

Rebecca J. Lester

“The self” has seen a surprising resurgence in recent anthropological theorizing, revitalizing interest in whether and how it can be studied ethnographically. These issues are brought to the fore by a newly popular psychotherapy technique, Internal Family Systems therapy (IFS), as practiced in a US eating-disorders clinic. There, clinicians and clients negotiate tensions between this model’s understanding of a multiple, refracted self and managed-care companies’ insistence on personal responsibility. In considering the moral and pragmatic work of IFS in the clinic, a new critical anthropology of selfhood illuminates the vectors through which economic and political commitments become imbricated in the self.

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

A social scientist’s guide to the Final Rule

On 18 January 2017, sixteen federal agencies announced revisions to the Federal Policy for the Protection of Human Subjects. As I noted earlier, this marks a huge victory for historians, who have spent the last 20 years working to end the inappropriate interference of IRBs with oral history research.

In addition, the final rule includes several provisions of note to scholars in the humanities and social sciences. Here are some of them; I don’t claim it is a complete list.

No biospecimens overhaul; less controversy

The final rule “does not adopt the proposal to require that research involving nonidentified biospecimens be subject to the Common Rule, and that consent would need to be obtained in order to conduct such research.” This was the target of the greatest criticism from groups like the National Academies of Sciences, Engineering, and Medicine and SACHRP. So while this change has little direct bearing on the work of social scientists and scholars in the humanities, it will likely reduce the controversy surrounding the regulatory reform as a whole.

The abandonment of the biospecimens proposal could also reduce opposition to reform by conservatives. The House Freedom Caucus opposed a new Common Rule on the grounds that it would cost $13.334 billion over 10 years. This figure seems to have been drawn from the NPRM’s quantified costs of $13.342 billion (using a 3 percent discount rate), and ignored the NPRM’s quantified benefits of $2.6 billion. If all the Freedom Caucus cares about is money, it may like the final rule a lot more.

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

United States of America Frees Oral History!

This morning sixteen federal agencies announced revisions to the Federal Policy for the Protection of Human Subjects, effective 19 January 2018. The final rule preserves and clarifies the NPRM’s deregulation of oral history. This is a great victory for freedom of speech and for historical research.

The NPRM somewhat confusingly listed a number of activities “deemed not to be research” in §__.101, then presented the definition of research itself in §__.102. The final policy more logically defines research, then lists “activities … deemed not to be research.”

Whereas the NPRM excluded “Oral history, journalism, biography, and historical scholarship activities that focus directly on the specific individuals about whom the information is collected,” the final rule offers a broader exclusion:

For purposes of this part, the following activities are deemed not to be research:
(1) Scholarly and journalistic activities (e.g., oral history, journalism, biography, literary criticism, legal research, and historical scholarship), including the collection and use of information, that focus directly on the specific individuals about whom the information is collected.
[§__.102(l)(1)]

(Emphasis added, because I can.)

So freedom depends on the activity, not the discipline, with literary critics, law professors, and others who interview individuals benefiting. Another section of the announcement notes that this provision will also apply to political scientists and others who hope “to hold specific elected or appointed officials up for public scrutiny, and not keep the information confidential.”

The announcement explains the reasoning:

In these activities, the ethical requirement is to provide an accurate and evidence-based portrayal of the individuals involved, and not necessarily to protect them from public scrutiny.

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

Whither Peer Review at CIHR

Matthew Herder reviews three significant problems with the peer review system at CIHR, as a result of which high-quality research by social science and humanities researchers is left ‘undone.’

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There are many problems with the current peer review system managed by the Canadian Institutes of Health Research (CIHR) – Canada’s federal funding agency for health-related research. Three discrete problems, however, merit special attention given their relevance to proposed reforms to CIHR’s investigator-initiated research programs.

Failure to address these problems will exacerbate the challenges that researchers in the social sciences and humanities already face when applying for funding from CIHR. It will also mean that CIHR continues to spend (at least some of its) health research dollars in a less than efficient and effective manner. Consider the following scenarios:

Whence and Whither? (Circa 1932) by Cyril Edward Power. Image Credit: The Wolfsonian–Florida International University, Miami Beach, Florida, The Mitchell Wolfson, Jr. Collection

Scenario 1: A team of anthropologists applies for CIHR funding to study the development of vaccines using ‘actor network theory.’ The grant is rejected because the reviewers are baffled as to why the researchers need ‘actors’ to carry out their research.

Actor network theory is a legitimate approach to social theory and research, yet the reviewers believed the applicants proposed to hire thespians as part of their grant. While the evidence is anecdotal, scholars in the social sciences and humanities frequently report receiving rejection letters from CIHR that unequivocally betray the peer reviewers’ lack of understanding of the applicants’ fields of research.

Part of the problem in providing appropriate peer review at CIHR is that the pool of potential reviewers with training in the social sciences and humanities as applied to the field of health is fairly small.

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 News

The Practical Ethics of University Engagement

The Arrighi Center for Global Studies has been awarded funding from the JHU Exploration of Practical Ethics Program for a project titled “The Practical Ethics of University Engagement: Lessons from the Local and Global.” The project explores ethical issues that arise out of the historical legacies of racial and class inequalities, both within the university and between the university and community. Through a year-long General Seminar involving faculty and students, the project will critically examine experiences with community-based learning/research, service-learning and university transformation, with a special emphasis on learning from the experiences of colleagues facing analogous challenges around the world, from the UK to China and South Africa.

 

Here, Beverly Silver (Director of the Arrighi Center for Global Studies and Chair of the Sociology Department), Sahan Karatasli and Daniel Pasciuti (Assistant Research Scientists at the Arrighi Center), Chris Westcott (PhD candidate in English) and Christopher Nealon (Chair of the English Department), answer our questions.

 

What inspired this project?

 

When the Arrighi Center for Global Studies was established in 2012, our goal was to provide a space for a critical analysis of urgent problems arising from contemporary processes of globalization, including ethical debates around questions of local/global governance, democratic entitlements, violence, and inequality. The April 2015 uprising in Baltimore following the death of Freddie Gray gave a new sense of urgency to our desire to focus directly on the ethical dimensions of contemporary capitalism, as it not only put a spotlight on the deep racial and class disparities in the city but also brought to the surface a set of urgent ethical questions about the relationship between the university and the community.

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

Religious exemptions to assisted dying harm patients

Stuart Chambers argues that faith-based institutions should not be ‘conscientiously objecting’ to medical assistance in dying.

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Since the passing of Bill C-14 “An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying),” the debate over negative and positive rights has resurfaced. Assisted dying advocates emphasize negative rights. They insist that the state should refrain from interfering in the intimate personal decisions of its citizens. However, they also make claims about positive rights insofar as the state has an obligation to provide the resources—hospitals, staff, drugs—required to fulfill a dignified death. Without both types of rights — negative and positive — the Act is groundless. When faith-based hospitals demand religious exemptions from medical assistance in dying, they are, thereby, undermining personal dignity. The result is increased vulnerability and suffering for patients.

For reasons of conscience, individual health care professionals may refrain from providing end-of-life services. There is nothing in the Act, however, that remotely suggests that publicly-funded hospitals are exempt from the responsibility to provide medical assistance in dying.  This has not stopped faith-based institutions from imposing their theological worldview on their patients. In December 2015, the Catholic Health Sponsors of Ontario rejected any exception for physician-assisted death in its institutions and would not “directly or explicitly” refer a patient to get the medical procedure elsewhere.

Concordia Hospital

This religious bias, however, was not in sync with the attitudes of Ontarians. When polled in October 2016, 57% of Ontario residents disapproved of the position of Catholic hospitals on medical assistance in dying.

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

Calls for Ethical Pluralism

In separate essays, Nathan Emmerich and Igor Gontcharov argue for more flexible systems that would avoid imposing biomedical ethics on the social sciences. Emmerich calls for an emphasis on professional ethics, while Gontcharov seeks “a set of ethical principles that would better reflect the position of [social sciences and humanities] researchers and participants.” I am left unsure what either proposed reform would look like in practice.

[Nathan Emmerich, “Reframing Research Ethics: Towards a Professional Ethics for the Social Sciences,” Sociological Research Online 21, no. 4 (2016): 7, DOI: 10.5153/sro.4127; Igor Gontcharov, “A New Wave of Positivism in the Social Sciences: Regulatory Capture and Conceptual Constraints in the Governance of Research Involving Humans,” SSRN Scholarly Paper (Rochester, NY: Social Science Research Network, October 31, 2016), DOI: 10.2139/ssrn.2861908.]

Emmerich seeks professional ethics

Emmerich argues that

the social sciences can lay claim to a democratic ideal as its ‘higher good’ and, therefore, its guiding ethos or end… .

Given this end – democracy – social science research is persuaded not for its own sake or for the sake of knowledge in itself. Rather, its pursuit is rooted in the (admittedly diverse) socio-political needs of ‘democracy,’ understood as an ethos or normative as an end in itself.

Because of the importance of this work, he argues, researchers should not be constrained by ethics committees. Instead, he proposes that social scientists be judged by the equivalent of clinical ethics committees (CECs), which Emmerich describes as

forums healthcare professionals can attend in order to discuss any ethical issues they encounter.

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

Will Cures Act Replace Common Rule Reform?

As of November 15, POLITICO thinks that Common Rule reform is dead:

HHS’s controversial revision of the Common Rule, the regulations that protect participants in clinical research, still hasn’t been sent to OMB for review. That’s not likely to get finished under Obama’s watch.

(David Pittman, “Obama’s HHS, Congress at Potential Odds over Pending Rule,” POLITICO, November 15, 2016)

On the other hand, Congress just passed the 21st Cures Act, which includes a provision for a Research Policy Board designed, as Science puts it, to “examine excessive regulation of research.”

In his September 29 testimony before the Subcommittee on Research and Technology, James Luther of Duke University suggested that the congressional effort could replace the executive one. He complained “that HHS is still trying to move forward with a final rule [for human subjects research] for which many of the proposals remain unchanged from the ANPRM despite overwhelmingly negative comments” about its provisions on biospecimens. And he suggested that a Research Policy Board might do a better job.

Perhaps such a board would attend to questions of concern to the social sciences and humanities, but I am not hopeful. Luther’s testimony cites the May 2016 analysis by the Council on Governmental Relations (COGR) and the Association of Public and Land-grant Universities (APLU) and the June report by the National Academies of Sciences, Engineering, and Medicine’s Committee on Federal Research Regulations and Reporting Requirements. Both of those documents mostly ignored the social sciences and humanities.

The sun never sets on the Ethical Empire.

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 News

Bioethicists Urge Caution in Teaching High Value Care

Calling for an “unwavering focus on the primacy of patient welfare,” a pair of medical ethics scholars urges careful consideration of how the concept of high-value care (HVC) should be integrated in medical education.

 

The JAMA Viewpoint published December 6 states, “if primacy of patient welfare is to truly remain fundamental to the profession, instilling commitment to this principle should be the most critical ethical value instilled in cultivating professional identity.”

 

If ‘value’ is considered the ratio of health benefits achieved per unit of cost, value can be increased in several ways: increasing health benefits, decreasing costs, or accepting less health benefit as a trade-off for cost savings.

 

Teaching approaches that over-emphasize cost savings “could risk causing trainees to lose sight of individual patient welfare or create unintended consequences for subsequent bedside decision-making,” write Viewpoint authors Matthew DeCamp, MD, PhD, and Kevin Riggs MD, MPH

 

“Physicians must sometimes balance ethical tension between cost-saving and patient welfare. The best way to do this is unsettled among ethics scholars and practicing physicians. This lack of consensus could lead to inexperienced medical trainees misunderstanding their duty,” says DeCamp, assistant professor at the Johns Hopkins Berman Institute of Bioethics and Division of General Internal Medicine.

 

The consequences could be damaging to both the physician-patient relationship and the profession, the authors say. “[A]mbiguity regarding the primacy of patient welfare in HVC education risks patient distrust and societal backlash against what might be perceived as training future physicians to control costs at the expense of patient welfare.”

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

Is It Okay to Say that Research ‘Verges on Scientific Racism’? by Matthew Wolf-Meyer

Last fall, a group of researchers – mostly biological anthropologists and sleep researchers – published a study of three ‘pre-industrial’ communities, one in Latin America, two in Africa, and claimed that based on their data, consolidated nightly sleep is a human norm, inferring that it is the product of natural selection. The media picked up the research findings, and I read write ups of it in a number of outlets, which led me to the original article and sparked conversations with me and other sleep-interested scholars about the validity of the research. A couple of months later, I was asked by the editor of Sleep Health if I would like to respond to the findings of the article (which you can find here), in part because the researchers made an argument against a claim that I have made – corroborating Roger Ekirch – that human sleep has only recently consolidated, largely as a result of industrial capitalism in the 19th century. But I was primarily motivated by the anthropology-informed opportunity to point out that no contemporary society offers us a window to some pre-industrial past or earlier evolutionary moment. To suggest otherwise – and here I’m quoting myself – ‘verges on scientific racism.’

So what was the assumption that the researchers were working off of that would lead them to such a claim and why would I find it controversial? They took a form of social organization – namely hunter-gatherer foraging – as indicating that the people who practice that form of subsistence share qualities with a stage of human history when that social organization was predominant.

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.