scholarly journals Invisible Participants: Recommendations for Researchers Using Crowdsourcing Platforms for Human Subjects Research

2019 ◽  
Author(s):  
Clair Morrissey ◽  
Myka Yamasaki ◽  
Carmel Levitan
Keyword(s):  
Data Collection ◽  
Study Design ◽  
Human Subjects ◽  
Research Participation ◽  
Large Datasets ◽  
Human Subjects Research ◽  
Ethical Considerations ◽  
Ethical Concerns ◽  
Fair Compensation ◽  
The Relationship

Increasingly, behavioral scientists rely on crowdsourcing platforms (e.g., Amazon’s MTurk) to collect large datasets rapidly and inexpensively. However, by heightening the distance between participants and researchers, these platforms render the participants “invisible,” and thereby raise ethical concerns related to participant autonomy. Moreover, because many participants use these platforms to earn a living, researchers must consider issues of fair compensation, and the relationship between employment and research participation. We present an overview of ethical considerations raised by the invisibility of crowdsourced research participants, including recommendations for researchers to consider in deciding whether and how to utilize these platforms. Specifically, we recommend that researchers: explore alternatives that distinguish research from employment; strengthen participant-research communication, including by recognizing and utilizing participant expertise in study design; and, explore alternatives that do not require “payment,” or, barring that, determine and pay appropriate compensation. We conclude by locating these ethical considerations in the context of broader calls for more thoughtful data collection.

scholarly journals Design of a field trial to develop a tabletop platform for rapid detection of XDR-TB in clinical samples (Preprint)

2020 ◽  
Author(s):  
Naomi Hillery ◽  
Marva Seifert ◽  
Donald G Catanzaro ◽  
Symone McKinnon ◽  
Rebecca E Colman ◽  
...  
Keyword(s):  
Clinical Study ◽  
Data Collection ◽  
Study Design ◽  
Human Subjects ◽  
Bacterial Load ◽  
Objective Evaluation ◽  
Clinical Samples ◽  
Prospective Clinical Study ◽  
Global Public Health ◽  
Drug Concentrations

BACKGROUND Extensively drug-resistant tuberculosis (XDR-TB) continues to be a serious threat to global public health, due in part to the lack of accurate and efficient diagnostic devices for XDR-TB. A prospective clinical study in an intended-use cohort was designed to evaluate the Akonni Biosystems XDR-TB TruArray® and Lateral Flow Cell (XDR-LFC), which has the potential to address this gap in TB diagnostics. OBJECTIVE The objective of this publication is to share documentation of the study conceptualization and design that is replicable and of use to the scientific community. METHODS This clinical study was conducted in three phases, the first to observe changes in bacterial load and culture positivity in patient sputa over time and better understand the diversity of prospective clinical samples, the second to prospectively collect clinical samples for sensitivity and specificity testing of the Akonni Biosystems XDR-LFC device, and the third to explore anti-TB drug concentrations in serum over the course of DR-TB treatment. RESULTS The methodology described includes the study design, laboratory sample handling, data collection, and human subjects protection elements of the clinical study to evaluate a potential new XDR-TB diagnostic device. The complex systems implemented facilitated thorough clinical data collection for objective evaluation of the device. This trial is closed to recruitment. Follow-up data collection and analysis are in progress. CONCLUSIONS This publication outlined the methods used in a prospective cohort study to evaluate a device to rapidly detect XDR-TB. The documentation of this clinical study design may be of use to other researchers with similar goals.

Centering Human Subjects: The Ethics of “Desk Research” on Political Violence

2020 ◽  
Author(s):  
Amelia Hoover Green ◽  
Dara Kay Cohen
Keyword(s):  
Political Violence ◽  
Quantitative Data ◽  
Direct Contact ◽  
Human Subjects ◽  
Research Data ◽  
Ethical Considerations ◽  
Ethical Concerns ◽  
Secondary Sources ◽  
Data Production ◽  
Desk Research

Abstract Quantitative data about political violence are frequently based on “desk research,” data derived from secondary sources that do not require direct contact between researchers and participants, such as people who witnessed or experienced violence. The research that employs these data is often viewed implicitly as ethically uncomplicated. In contrast, we argue that the production and analysis of political violence data coded from secondary sources require careful ethical deliberation regarding human subjects concerns. We consider two broad classes of quantitative political violence data often gathered through desk research: incident lists and indices. For both types, we identify ethical concerns about how data production and use can affect research participants. We conclude by offering a series of suggestions on how to incorporate ethical considerations about human subjects into the design and evaluation of political violence research based on secondary sources.

scholarly journals A call for structured ethics appendices in social science papers

2021 ◽  
Vol 118 (29) ◽  
pp. e2024570118
Author(s):  
Edward Asiedu ◽  
Dean Karlan ◽  
Monica Lambon-Quayefio ◽  
Christopher Udry
Keyword(s):  
Data Collection ◽  
Social Science ◽  
Conflicts Of Interest ◽  
Human Subjects ◽  
Intellectual Freedom ◽  
Institutional Review Boards ◽  
Human Subjects Research ◽  
Research Results ◽  
Institutional Review

Ethics in social science experimentation and data collection are often discussed but rarely articulated in writing as part of research outputs. Although papers typically reference human subjects research approvals from relevant institutional review boards, most recognize that such boards do not carry out comprehensive ethical assessments. We propose a structured ethics appendix to provide details on the following: policy equipoise, role of the researcher, potential harms to participants and nonparticipants, conflicts of interest, intellectual freedom, feedback to participants, and foreseeable misuse of research results. We discuss each of these and some of the norms and challenging situations of each. We believe that discussing such issues explicitly in appendices of papers, even if briefly, will serve two purposes: more complete communication of ethics can improve discussions of papers and can clarify and improve the norms themselves.

Acoustic Separation and Biomedical Research: Lessons from Indian Regulation of Compensation for Research Injury

2015 ◽  
Vol 43 (1) ◽  
pp. 105-115
Author(s):  
Megan E. Larkin
Keyword(s):  
Clinical Trials ◽  
Biomedical Research ◽  
Human Subjects ◽  
Research Participation ◽  
Ethical Conduct ◽  
Critical Component ◽  
Human Subjects Research ◽  
Indian Central ◽  
Legal Restrictions ◽  
Human Participants

In early 2013, the Indian Central Drugs Standard Control Organisation, under supervision of the Health Secretary, introduced new rules governing the conduct of clinical trials involving human participants. Among other provisions, the rules require that sponsors of research compensate participants who are injured during the course of their research participation. The rules presumably were drafted to protect citizens from harm caused by biomedical research without unduly restricting access to the benefits that research can provide. While requiring compensation for injury is widely-acknowledged as a critical component of ensuring ethical conduct of human subjects research, in this case the legal restrictions do not match the ethical justifications that support a compensation requirement. To see this, it is important to examine the context in which the rules were written, the justifications for rules of this type, and what mechanisms are available to bring the effects of the rules into alignment with the norms their passage sought to promote.

scholarly journals Engaging Ethicists in Animal Research Policymaking

ILAR Journal ◽  
2020 ◽  
Author(s):  
Angela N Hvitved
Keyword(s):  
Professional Ethics ◽  
Research Policy ◽  
Human Subjects ◽  
Animal Research ◽  
Ethical Framework ◽  
Human Subjects Research ◽  
Deliberative Process ◽  
Ethical Considerations ◽  
Key Stakeholders

Abstract The significance of ethical considerations for animal research policy has long been acknowledged, but the role of philosophical ethics in the policymaking process has been less clear. By comparing the ethical framework of animal research policy with that for human subjects research, this article considers how the legacies of these two policy areas influence current policy and suggests that ethicists and ethical scholarship have been underutilized in developing animal research policy. An important aspect of policymaking is gathering and responding to input provided by various stakeholders. Given their expertise in a highly relevant area, ethicists should be considered key stakeholders in animal research policy deliberations. This article explores the role of ethicists and ethical scholarship in influencing animal research policy and suggests that a more robust engagement with the professional ethics community throughout the deliberative process is vital for policymakers to adequately account for ethical considerations.

Ethical Considerations in Human Subjects Research

2014 ◽  
Vol 40 (1) ◽  
pp. 92-94 ◽  
Author(s):  
Anne Manton ◽  
Lisa A. Wolf ◽  
Kathy M. Baker ◽  
Margaret J. Carman ◽  
Paul R. Clark ◽  
...  
Keyword(s):  
Human Subjects ◽  
Human Subjects Research ◽  
Ethical Considerations

Ending Concerns about Undue Inducement

2004 ◽  
Vol 32 (1) ◽  
pp. 100-105 ◽  
Author(s):  
Ezekiel J. Emanuel
Keyword(s):  
Clinical Trial ◽  
Clinical Research ◽  
Human Subjects ◽  
Human Subjects Research ◽  
Ethical Concerns ◽  
Substantial Risk ◽  
Heavy Burden ◽  
The Common ◽  
Undue Inducement ◽  
Radical Claim

For decades, worries about undue inducement have Pervaded clinical research, and are especially common when research is accompanied by payment or conducted in developing countries. Few ethical judgments carry as much moral opprobrium or are thought to undermine the ethical soundness of a clinical trial as thoroughly as undue inducement. Indeed, the admonition to prevent undue inducement is one of the few explicit instructions in the Common Rules requirements for informed consent.Despite their long history and pervasiveness, charges of undue inducement in clinical research are almost always mistaken. Indeed, I will advance an even more radical claim: Aresearch trial that otherwise fulfills the fundamental ethical requirements for human subjects research inherently cannot create the possibility of undue inducement because substantial risk of serious harm isprecluded. Charges of undue inducement tend to express displaced and mislabeled ethical concerns about other aspects of human subjects research. Consequently, claims of undue inducement should rarely be made, and when they are advanced should be treated with skepticism, placing a heavy burden of proofon those advancing such charges.

scholarly journals Ethics in economics: lessons from human subjects research

2012 ◽  
Vol 5 (1) ◽  
pp. 24 ◽  
Author(s):  
Megan Blomfield
Keyword(s):  
Moral Philosophy ◽  
Human Subjects ◽  
Ethical Principles ◽  
Human Subjects Research ◽  
Ethical Guidelines ◽  
Ethical Concerns ◽  
Economic Practice ◽  
Economics Profession ◽  
Ethical Responsibilities

Many economists, it is said, "are inclined to deny that moral philosophy has anything to do with economics" (Hausman and McPherson 2006, 291). In this paper I challenge such inclinations by drawing an analogy between economic interventions and human subjects research. It is undeniable that investigators engaged in the latter should adhere to specific ethical principles. I argue that analogous features of economic interventions should lead us to recognise that similar ethical concerns actually arise in both activities, and thus that economic interventions should also be conducted in accordance with ethical principles. By exploring the analogy further I formulate some ethical guidelines for economic practice, which in turn imply that ethical responsibilities will extend to all members of the economics profession.

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