Dataset Information

Research Ethics in the Age of Digital Platforms.

ABSTRACT: Scientific research is growingly increasingly reliant on "microwork" or "crowdsourcing" provided by digital platforms to collect new data. Digital platforms connect clients and workers, charging a fee for an algorithmically managed workflow based on Terms of Service agreements. Although these platforms offer a way to make a living or complement other sources of income, microworkers lack fundamental labor rights and basic safe working conditions, especially in the Global South. We ask how researchers and research institutions address the ethical issues involved in considering microworkers as "human participants." We argue that current scientific research fails to treat microworkers in the same way as in-person human participants, producing de facto a double morality: one applied to people with rights acknowledged by states and international bodies (e.g., the Helsinki Declaration), the other to guest workers of digital autocracies who have almost no rights at all. We illustrate our argument by drawing on 57 interviews conducted with microworkers in Spanish-speaking countries.

SUBMITTER: Molina JL

PROVIDER: S-EPMC10127972 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature

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Research Ethics in the Age of Digital Platforms.

Molina José Luis JL Tubaro Paola P Casilli Antonio A Santos-Ortega Antonio A

Science and engineering ethics 20230425 3

Scientific research is growingly increasingly reliant on "microwork" or "crowdsourcing" provided by digital platforms to collect new data. Digital platforms connect clients and workers, charging a fee for an algorithmically managed workflow based on Terms of Service agreements. Although these platforms offer a way to make a living or complement other sources of income, microworkers lack fundamental labor rights and basic safe working conditions, especially in the Global South. We ask how researc ...[more]

PMID: 37185917

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Project description:BackgroundPsychiatry has long needed a better and more scalable way to capture the dynamics of behavior and its disturbances, quantitatively across multiple data channels, at high temporal resolution in real time. By combining 24/7 data-on location, movement, email and text communications, and social media-with brain scans, genetics, genomics, neuropsychological batteries, and clinical interviews, researchers will have an unprecedented amount of objective, individual-level data. Analyzing these data with ever-evolving artificial intelligence could one day include bringing interventions to patients where they are in the real world in a convenient, efficient, effective, and timely way. Yet, the road to this innovative future is fraught with ethical dilemmas as well as ethical, legal, and social implications (ELSI).ObjectiveThe goal of the Ethics Checklist is to promote careful design and execution of research. It is not meant to mandate particular research designs; indeed, at this early stage and without consensus guidance, there are a range of reasonable choices researchers may make. However, the checklist is meant to make those ethical choices explicit, and to require researchers to give reasons for their decisions related to ELSI issues. The Ethics Checklist is primarily focused on procedural safeguards, such as consulting with experts outside the research group and documenting standard operating procedures for clearly actionable data (eg, expressed suicidality) within written research protocols.MethodsWe explored the ELSI of digital health research in psychiatry, with a particular focus on what we label "deep phenotyping" psychiatric research, which combines the potential for virtually boundless data collection and increasingly sophisticated techniques to analyze those data. We convened an interdisciplinary expert stakeholder workshop in May 2020, and this checklist emerges out of that dialogue.ResultsConsistent with recent ELSI analyses, we find that existing ethical guidance and legal regulations are not sufficient for deep phenotyping research in psychiatry. At present, there are regulatory gaps, inconsistencies across research teams in ethics protocols, and a lack of consensus among institutional review boards on when and how deep phenotyping research should proceed. We thus developed a new instrument, an Ethics Checklist for Digital Health Research in Psychiatry ("the Ethics Checklist"). The Ethics Checklist is composed of 20 key questions, subdivided into 6 interrelated domains: (1) informed consent; (2) equity, diversity, and access; (3) privacy and partnerships; (4) regulation and law; (5) return of results; and (6) duty to warn and duty to report.ConclusionsDeep phenotyping research offers a vision for vastly more effective care for people with, or at risk for, psychiatric disease. The potential perils en route to realizing this vision are significant; however, and researchers must be willing to address the questions in the Ethics Checklist before embarking on each leg of the journey.

Project description:Our world is in the midst of unprecedented change-climate shifts and sustained, widespread habitat degradation have led to dramatic declines in biodiversity rivaling historical extinction events. At the same time, new approaches to publishing and integrating previously disconnected data resources promise to help provide the evidence needed for more efficient and effective conservation and management. Stakeholders have invested considerable resources to contribute to online databases of species occurrences. However, estimates suggest that only 10% of biocollections are available in digital form. The biocollections community must therefore continue to promote digitization efforts, which in part requires demonstrating compelling applications of the data. Our overarching goal is therefore to determine trends in use of mobilized species occurrence data since 2010, as online systems have grown and now provide over one billion records. To do this, we characterized 501 papers that use openly accessible biodiversity databases. Our standardized tagging protocol was based on key topics of interest, including: database(s) used, taxa addressed, general uses of data, other data types linked to species occurrence data, and data quality issues addressed. We found that the most common uses of online biodiversity databases have been to estimate species distribution and richness, to outline data compilation and publication, and to assist in developing species checklists or describing new species. Only 69% of papers in our dataset addressed one or more aspects of data quality, which is low considering common errors and biases known to exist in opportunistic datasets. Globally, we find that biodiversity databases are still in the initial stages of data compilation. Novel and integrative applications are restricted to certain taxonomic groups and regions with higher numbers of quality records. Continued data digitization, publication, enhancement, and quality control efforts are necessary to make biodiversity science more efficient and relevant in our fast-changing environment.

Dataset Information

Research Ethics in the Age of Digital Platforms.

Publications

Research Ethics in the Age of Digital Platforms.

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