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1.
J Bioeth Inq ; 20(2): 249-263, 2023 06.
Article in English | MEDLINE | ID: mdl-37219760

ABSTRACT

Scholars have noted persistent high rates of agricultural health and safety incidents and the need to develop more effective interventions. Participatory research provides an avenue to broaden the prevailing research paradigms and approaches by allowing those most impacted to illuminate and work to solve those aspects of their lives. One such approach is photovoice, an emancipatory visual narrative approach. Yet, despite its broad appeal, photovoice can be hard to implement. In this article, we leverage our experience using photovoice for a farm children safety project to describe and reflect on the ethical and methodological aspects broadly relevant to agricultural health and safety topics. We first contextualize the tensions of navigating between photovoice, the research ethics committees (RECs) regulatory frameworks, and competing views on visual representations in agriculture. We then discuss the sources of risks to participants and researchers, how we addressed these risks, and how these risks unfolded during the research phase of the photovoice activity. We conclude with three lessons we (re)learned: the importance of collaborating with RECs, the need to increase preparation to limit psychological risks to participants and researchers, and avenues to augment the emancipatory power of photovoice in a virtual environment.


Subject(s)
Community-Based Participatory Research , Photography , Child , Humans , Community-Based Participatory Research/methods , Farms , Photography/methods , Narration
2.
AMA J Ethics ; 24(1): E99-105, 2022 01 01.
Article in English | MEDLINE | ID: mdl-35133734

ABSTRACT

Since the mid-1990s, poor oral health has been neglected as a public health threat, despite its recognition as epidemic in scale by the US Department of Health and Human Services Office of the Surgeon General. Americans' poor oral health influences their overall health and, from a population standpoint, incurs dire economic and human costs. This article describes how health information transfer within the Marshfield Clinic Health System's integrated medical and dental practice can improve diabetes care. This article also considers ethics and equity implications of improving MDP electronic health record interoperability in this large, rural Wisconsin organization.


Subject(s)
Diabetes Mellitus , Electronic Health Records , Ambulatory Care Facilities , Diabetes Mellitus/therapy , Humans , Oral Health
4.
PLoS One ; 12(12): e0187155, 2017.
Article in English | MEDLINE | ID: mdl-29194443

ABSTRACT

This is a formal commentary, responding to Matthew Curran Benigni, Kenneth Joseph, and Kathleen Carley's contribution, "Online extremism and the communities that sustain it: Detecting the ISIS supporting community on Twitter". This brief review reflects on the ethics of big data research methodologies, and how novel methods complicate long-standing principles of research ethics. Specifically, the concept of the "data subject" as a corollary, or replacement, of "human subject" is considered.


Subject(s)
Ethics, Research , Islam , Social Media , Humans
5.
Cardiovasc Res ; 107(4): 453-65, 2015 Sep 01.
Article in English | MEDLINE | ID: mdl-26101264

ABSTRACT

AIMS: Cardiomyopathy is a major complication of diabetes. Our study was aimed to identify the sites of mitochondrial dysfunction and delineate its consequences on mitochondrial metabolism in a model of type 1 diabetes. METHODS AND RESULTS: Diabetes was induced by streptozotocin injection to male Lewis rats. We found a decrease in mitochondrial biogenesis pathway and electron transport chain complex assembly that targets Complex I. Oxidation of Complex II and long-chain fatty acid substrates support the electron leak and superoxide production. Mitochondrial defects do not limit fatty acid oxidation as the heart's preferred energy source indicating that the diabetic heart has a significant reserve in Complex I- and II-supported ATP production. Both mitochondrial fatty acid oxidation and Complex I defect are responsible for increased protein lysine acetylation despite an unchanged amount of the NAD(+)-dependent mitochondrial deacetylase sirt3. We quantitatively analysed mitochondrial lysine acetylation post-translational modifications and identified that the extent of lysine acetylation on 54 sites in 22 mitochondrial proteins is higher in diabetes compared with the same sites in the control. The increased lysine acetylation of the mitochondrial trifunctional protein subunit α may be responsible for the increased fatty acid oxidation in the diabetic heart. CONCLUSION: We identified the specific defective sites in the electron transport chain responsible for the decreased mitochondrial oxidative phosphorylation in the diabetic heart. Mitochondrial protein lysine acetylation is the common consequence of both increased fatty acid oxidation and mitochondrial Complex I defect, and may be responsible for the metabolic inflexibility of the diabetic heart.


Subject(s)
Diabetes Mellitus, Type 1/metabolism , Fatty Acids/metabolism , Mitochondria, Heart/metabolism , Mitochondrial Proteins/metabolism , Acetylation , Animals , Diabetes Mellitus, Type 1/complications , Disease Models, Animal , Electron Transport Complex I/metabolism , Heart/physiopathology , Lipid Metabolism/physiology , Lysine/metabolism , Male , Oxidation-Reduction , Rats, Inbred Lew
6.
J Empir Res Hum Res Ethics ; 6(2): 71-83, 2011 Jun.
Article in English | MEDLINE | ID: mdl-21680978

ABSTRACT

This paper explores the growing concerns with computer science research, and in particular, computer security research and its relationship with the committees that review human subjects research. It offers cases that review boards are likely to confront, and provides a context for appropriate consideration of such research, as issues of bots, clouds, and worms enter the discourse of human subjects review.


Subject(s)
Computer Security/ethics , Ethics Committees, Research , Ethics, Research , Human Experimentation/ethics , Research Subjects , Humans
7.
J Empir Res Hum Res Ethics ; 4(2): 37-48, 2009 Jun.
Article in English | MEDLINE | ID: mdl-19480590

ABSTRACT

A SURVEY OF 750 UNIVERSITY HUMAN Research Ethics Boards (HRECs) in the United States revealed that Internet research protocols involving online or Web surveys are the type most often reviewed (94% of respondents), indicating the growing prevalence of this methodology for academic research. Respondents indicated that the electronic and online nature of these survey data challenges traditional research ethics principles such as consent, risk, privacy, anonymity, confidentiality, and autonomy, and adds new methodological complexities surrounding data storage, security, sampling, and survey design. Interesting discrepancies surfaced among respondents regarding strengths and weaknesses within extant guidelines, which are highlighted throughout the paper. The paper concludes with considerations and suggestions towards consistent protocol review of online surveys to ensure appropriate human subjects protections in the face of emergent electronic tools and methodologies.


Subject(s)
Data Collection/ethics , Ethics Committees, Research , Internet/ethics , Computer Security/ethics , Confidentiality/ethics , Education, Continuing/ethics , Guideline Adherence/ethics , Humans , Informed Consent/ethics , Research Design , United States
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