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(US) Rounding up the Belmont Report Retrospectives – Amp@sand (May 2019)0

Posted by Admin in on June 27, 2019
 

Last month brought the 40th anniversary of the publishing of the Belmont Report, and along with that milestone came a reflection on how its values, conclusions, and imperatives have changed in the intervening years. A celebration of its durability has been accompanied by a necessary reckoning with the ways that a 40-year-old document may be ill-equipped to process the ethical issues brought about by technological, cultural, and political changes. Here, we’ve gathered a range of resources that look back on 40 years of the Belmont Report.

Safeguards for human studies can’t cope with big data
Nature
This provocative piece explores the ways in which the Belmont Report is insufficient for dealing with revolutionary digital technologies, arguing that “data science overlooks risks to human participants by default” and that it is “past time for a Belmont 2.0.” That new summit, the author argues, would need to engage with the currently “poorly understood risks and harms” that big data researches poses to humans.

A Belmont Report for Health Data (abstract available)
The New England Journal of Medicine
HIPAA offers robust protection of a limited range of data, but in 2019, the demands on humans’ health data come from far more directions than the 1996 legislation could anticipate. The authors of this NEJM piece call for a coordinated expansion of the scope of ethical review of the gathering, use, and manipulation of health data to account for sources such as “social-media platforms, health and wellness apps, smartphones [and] life insurers,” citing concerns about reidentification of deidentified data, discrimination, health profiling, and more.

Read the rest of this discussion piece

(US) FDA says HCMC doctors kept ketamine study going after pledging to stop – Star Tribune (Andy Mannix | June 2019)0

Posted by Admin in on June 23, 2019
 

Medical staff at HCMC continued to sedate people with ketamine and collect data for a study for months after the hospital’s leadership told elected officials they had voluntarily halted the research in response to questions over ethics and patient safety.

New inspection reports from federal regulators also say that doctors involved in the research failed to disclose incidents of patients suffering serious medical complications — such as trouble breathing or high blood pressure — to the committee in charge of keeping study subjects safe.

HCMC officials have already responded to the reports, vigorously rebutting many of the findings.

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People want to be able to influence the risk – The Ethics Blog (Pär Segerdahl | May 2019)0

Posted by Admin in on June 16, 2019
 

We need to do research to know what people think is important in genetic risk information. What they prefer to know. But how do we find out? One way is to ask people to answer questionnaires.

One problem with questionnaires is that they ask one thing at a time. Do you prefer a hotel room with a sea view when you are on vacation? You probably answer yes. But do you prefer the sea view even if the room is above the disco, or costs 500 EUR per night? If you only ask one thing at a time, then it is difficult to know how different factors interact, how important they are relative to each other.

One way to get past this limitation is to ask people to choose between two alternatives, where the alternatives have several different attributes.

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Thinking about ethics in Burma research (Papers: Lisa Brooten & Rosalie Metro | 2014)0

Posted by Admin in on May 28, 2019
 

Burma’s colonial past, its years under military dictatorship, its ongoing ethnic and religious conflicts, and the current shifts in the political landscape all present unique challenges for researchers seeking to behave ethically with their informants, their institutions, each other, and the public sphere. The recent upsurge of interest in Burma presents an opportunity for scholars who study the country to reflect on the ethical dilemmas they have confronted and to articulate how they have addressed them. It is our hope that this effort can help those who specialize in Burma to consider the norms and divergences that exist within our inter-disciplinary scholarly community, and can aid those new to Burma Studies in navigating their research in a more informed manner. In light of the need for such a conversation, The Journal of Burma Studies agreed to publish this special issue.

For some human research designs, (sub)disciplines and methodologies matter.  Contextual factors, privacy and risk, as well as potential vulnerabilities can be entirely different and a peril for unprepared.   This thought-provoking paper is a discussion about ethical research in  Burma. We have included links to four other items about research in dangerous contexts.

The inspiration for this issue came from a panel discussion Rose organized at the 2012 Burma Studies Conference in DeKalb, Illinois, USA. Elliott Prasse-Freeman and Patrick McCormick both presented earlier versions of the essays included here, and Rose described her difficulties with using consent forms in her ethnographic research with teachers on the Thai-Burma border (Metro 2014). The audience members, who represented a broad cross-section of the field, raised a number of important issues that bear further exploration, and several tensions emerged that are echoed in these pages. In particular, a debate on the nature of objectivity between a senior and a mid-career scholar, both anthropologists, pointed to a generational paradigm shift toward an engagement with [End Page 1] the inevitably political nature of Burma Studies. Another exchange, between McCormick, a US researcher based in Burma, and a Burmese person based in the US, highlighted what McCormick calls the “hierarchies of interpretation” in which the academic credentials and positionality of local and international scholars privilege some epistemologies over others. Additionally, several scholars brought up concerns with the consequences of conducting and publishing their research, whether that meant jeopardizing local contacts or having their work appropriated to ends they did not support. These discussions were thought provoking, despite the brevity, and when we found ourselves talking after the conference about the need for more discussion, we decided to continue the conversation in these pages
.

Brooten, L. and Metro, R., (2014). Thinking about ethics in Burma research. Journal of Burma Studies, 18(1), pp.1-22.
Publisher: https://muse.jhu.edu/article/545023/pdf

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