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(US) UCSD has not told women with HIV of data breach, despite researchers’ pleas – inewsource (Jill Castellano & Brad Racino | May 2019)0

Posted by Admin in on June 22, 2019
 

University of California San Diego officials stonewalled attempts to notify women in an HIV research study that their confidential data was breached more than seven months ago, an inewsource investigation has found.

The commentary sidebar on the inewsource website sums up well why this is a big deal. If the story is correct, the breach is serious enough, but the failure to warn the women was a complete betrayal of trust.

UCSD researchers conducting the EmPower Women study told university officials in October that participants’ names, audio-taped conversations and other sensitive materials were made accessible to everyone working at Christie’s Place, a San Diego nonprofit supporting women with HIV and AIDS. They called the situation “very serious” and said the women affected are “within one of the most vulnerable and marginalized populations.”
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But internal emails, reports and meeting minutes chronicle months of communication between lead researcher Jamila Stockman — who pushed for telling two dozen women enrolled in the project about the breach — and UCSD officials concerned about the consequences.
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Read the rest of this new story

(US) ‘Banished’ blood, stool samples from San Diego veterans used in research article, despite federal probe – ienewsource (Brad Racino & Jill Castellano | May 2019)0

Posted by Admin in on June 6, 2019
 

Two prominent doctors associated with the University of California San Diego and the local VA used blood and stool samples taken from sick veterans to bolster a paper published this month in an academic research journal.

The specimens were not supposed to be used, according to the project’s lead researcher, because they were part of a study that unethically collected biological samples from living subjects without their consent, which investigators called “serious noncompliance.”

When people volunteer to be human research subjects, they accept potential health risks in order to contribute to a growing bank of scientific and medical knowledge.

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(Japan) 158 ethics violations found in research by Japan’s NCVC medical institute – The Japan Times (May 2019)0

Posted by Admin in on June 4, 2019
 

SUITA, OSAKA PREF. – The National Cerebral and Cardiovascular Center said Thursday it has found 158 cases of research that was conducted in violation of the country’s ethical standards.

The violations include the use of patients’ information without their consent, the NCVC said. There have been no reports of health damage linked to these cases that involved follow-up research, the institute said.

“We deeply apologize for the misconduct,” NCVC President Hisao Ogawa said at a news conference in Suita, where the institute is based.

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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
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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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