scholarly journals The Perils of Parity: Should Citizen Science and Traditional Research Follow the Same Ethical and Privacy Principles?

2020 ◽  
Vol 48 (S1) ◽  
pp. 74-81 ◽  
Author(s):  
Barbara J. Evans
Keyword(s):  
Citizen Science ◽  
Mobile Health ◽  
State Laws ◽  
Research Software ◽  
Privacy Laws ◽  
Traditional Research ◽  
The Individual ◽  
Access To Data ◽  
Right Of Access ◽  
Hipaa Privacy Rule

The individual right of access to one’s own data is a crucial privacy protection long recognized in U.S. federal privacy laws. Mobile health devices and research software used in citizen science often fall outside the HIPAA Privacy Rule, leaving participants without HIPAA’s right of access to one’s own data. Absent state laws requiring access, the law of contract, as reflected in end-user agreements and terms of service, governs individuals’ ability to find out how much data is being stored and how it might be shared with third parties. Efforts to address this problem by establishing norms of individual access to data from mobile health research unfortunately can run afoul of the FDA’s investigational device exemption requirements.

Biobanking Research and Privacy Laws in the United States

2016 ◽  
Vol 44 (1) ◽  
pp. 106-127 ◽  
Author(s):  
Heather L. Harrell ◽  
Mark A. Rothstein
Keyword(s):  
Human Subjects ◽  
The United States ◽  
Common Rule ◽  
State Laws ◽  
Privacy Rule ◽  
Biobank Research ◽  
Privacy Laws ◽  
The Us ◽  
Protection Of Human Subjects ◽  
Hipaa Privacy Rule

Privacy is protected in biobank-based research in the US primarily by the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule and the Federal Policy for Protection of Human Subjects (Common Rule). Neither rule, however, was created to function in the unique context of biobank research, and therefore neither applies to all biobank-based research. Not only is it challenging to determine when the HIPAA Privacy Rule or the Common Rule apply, but these laws apply different standards to protect privacy. In addition, many other federal and state laws may be applicable to a particular biobank, researcher, or project. US law also does not directly address international sharing of data or specimens outside of the EU–US Safe Harbor Agreement, which only applies to receipt of data by certain US entities from EU countries, and is in the process of revision. Although new rules would help clarify privacy protections in biobanking, any implemented changes should be studied to determine the sufficiency of the protections as well as its ability to facilitate or hinder international collaborations.

A Community Perspective on Research Software in the Hydrological Sciences 

2021 ◽  
Author(s):  
Robert Reinecke ◽  
Tim Trautmann ◽  
Thorsten Wagener ◽  
Katja Schüler
Keyword(s):  
Software Development ◽  
Scientific Progress ◽  
Open Science ◽  
Computer Engineering ◽  
Knowledge Community ◽  
Research Software ◽  
Software Engineering Process ◽  
First Results ◽  
Long Time ◽  
Access To Data

<div> <p>Software development has become an integral part of the earth system sciences as models and data processing get more sophisticated. Paradoxically, it poses a threat to scientific progress as the pillar of science, reproducibility, is seldomly reached. Software code tends to be either poorly written and documented or not shared at all; proper software licenses are rarely attributed. This is especially worrisome as scientific results have potential controversial implications for stakeholders and policymakers and may influence the public opinion for a long time. </p> </div><div> <p>In recent years, progress towards open science has led to more publishers demanding access to data and source code alongside peer-reviewed manuscripts. Still, recent studies find that results in hydrology can rarely be reproduced. </p> </div><div> <p>In this talk, we present first results of a poll conducted in spring 2021 among the hydrological science community. Therein, we strive to investigate the causes for that lack of reproducibility. We take a peek behind the curtain and unveil how the community develops and maintains complex code and what that entails for reproducibility. Our survey includes background knowledge, community opinion, and behaviour practices regarding reproducible software development.  </p> </div><div> <p>We postulate that this lack of reproducibility might be rooted in insufficient reward within the scientific community, insecurity regarding proper licencing of software and other parts of the research compendium as well as scientists’ unawareness about how to make software available in a way that allows for proper attribution of their work. We question putative causes such as unclear guidelines of research institutions or that software has been developed over decades by researchers' cohorts without a proper software engineering process and transparent licensing. </p> </div><div> <p>To this end, we also summarize solutions like the adaption of modern project management methods from the computer engineering community that will eventually reduce costs while increasing the reproducibility of scientific research. </p> </div>

Barriers and drivers regarding the use of mobile health applications among type 2 diabetes patients in the Netherlands: an explanatory sequential design (Preprint)

2021 ◽  
Author(s):  
Marloes Bults ◽  
Catharina Margaretha Van Leersum ◽  
Theo Olthuis ◽  
Robin Bekhuis ◽  
Marjolein Elisabeth Maria Den Ouden
Keyword(s):  
Mobile Health ◽  
Healthcare Professionals ◽  
Insurance Companies ◽  
Actual Use ◽  
Mobile Health Applications ◽  
Explanatory Sequential Design ◽  
The Individual ◽  
Depth Interviews ◽  
Health Applications

BACKGROUND In the Netherlands, type 2 diabetes mellitus (T2DM) is one of the most common chronic diseases and the number of patients is expected to increase in the coming years. Self-monitoring of blood glucose levels, food intake and physical activity supports the self-management of patients with T2DM. In the past few years, there has been a rise in the development and availability of mobile health applications (apps) for T2DM. OBJECTIVE The aim of this study was to explore the actual use of diabetes mobile health applications among T2DM-patients and main barriers and drivers among app-users and non-users. METHODS An explanatory sequential design was applied, starting with a web-based questionnaire followed by semi-structured in-depth interviews. Data were collected between July and December 2020. Questionnaire data from 103 respondents were analyzed using IBM SPSS Statistics 25.0. Descriptive statistics were performed for actual use of apps among T2DM-patients and the individual items of the Unified Theory of Acceptance and Use of Technology (UTAUT). Differences between users and non-users were tested through chi-square tests for the individual items. Independent t-tests were performed to test for differences in mean scores per UTAUT-construct. A total of 16 respondents contributed to the in-depth interviews, of which ten were users and six non-users of apps for T2DM. Content analysis with a deductive approach was performed on all transcripts guided by the UTAUT. RESULTS Regarding actual use, 55% (n=57) were non-users and 45% (n=46) were users of apps for T2DM. Mean scores were significantly higher among users of apps for T2DM for the constructs performance expectancy, effort expectancy, facilitating conditions and knowledge compared to the non-users (P<.001). One of the main drivers for use was the belief that using diabetes-apps would result in better personal health and well-being. Time and energy needed to keep track of data and understand the app were mentioned as barriers. Users scored significantly higher regarding social influence compared to the non-users (P.007). Healthcare professionals play an important role in the support of T2DM-patients in using apps. Respondents wanted to use the apps and acquired data together with their healthcare professionals. However, respondents noticed that their professionals often were not supportive regarding the use of diabetes-apps, didn’t had interest or did not talk about apps or acquired data. Reimbursement by insurance companies was mentioned as missing facilitator. CONCLUSIONS Empowering healthcare professionals’ engagement is of utmost important to support T2DM-patients in using apps. Insurance companies can have a role in facilitating the use of diabetes-apps, for example to assure reimbursement. Further research should focus on evaluation of patients experiences with different diabetes-apps and how to integrate mobile health applications with diabetes self-management care.

THEORY AND VOCATION OF THE POLICE IN MODERN STATE STUDIES: INTERPRETATION OF M. FОUCAULT

2021 ◽  
Vol 2 (2) ◽  
pp. 39-48
Author(s):  
Oleh Turenko ◽  
Keyword(s):  
A Priori ◽  
Social Institutions ◽  
Modern Society ◽  
Modern Concept ◽  
Practical Implementation ◽  
Regulatory Body ◽  
Continuous Control ◽  
State Laws ◽  
Theoretical Substantiation ◽  
The Individual

The Foucault’s interpretation of the police, its theoretical substantiation, the range of powers and managerial tasks in modernist discourses. The French philosopher emphasized it should the modern concept of “police” does not coincide with its original theories of modern times. The doctrines of modern political scientists idealized the vocation of the police and identified it with the entire government, providing it with universal means of implementing the state interest. Considering the police from the perspective of “history of thought” Foucault notes that it is the unlimited nature of police functions gave the modern government to approve a disciplinary society, a new form of government - bio-power. This form of power totally controlled the individual, “took care of him” at all levels of biological life and, above all, the depths of consciousness - artificially created his authenticity. At the same time, in the theories of political scientists, the police received the status of a self-regulatory body, whose activities were not strictly controlled by state laws. In this case, the police, in the imaginary sense, is the living embodiment of state interest, morality and integrity, the formative and corrective body of state power. In order to form a disciplined and productive life, the police must direct individuals to regulation, to their temporal and hierarchical repetition. The a priori qualities of the police and its all-encompassing powers form the basis for the assertion of the idea of a “police state” and its radical form of panopticon. It is thanks to the idea of panopticon, its practical implementation by the police in modern society - the formation of disciplinary practice of continuous control in the social institutions of modernism.

The Role of Citizen Science in Environmental Education

2017 ◽  
pp. 213-230
Author(s):  
Ria Ann Dunkley
Keyword(s):  
Environmental Education ◽  
Citizen Science ◽  
Scientific Data ◽  
Policy Documents ◽  
Governmental Organizations ◽  
Science Projects ◽  
Non Governmental Organizations ◽  
The Individual ◽  
Evaluation Approaches

Citizen Science is increasing in popularity and used by many academics, community groups and Non-Governmental Organizations in scientific data collection. Despite this, little is known about the motivations and experiences of those who contribute to citizen science projects, nor about the impacts of involvement in citizen science upon the individual. Moreover, few have considered the pedagogic process that individuals undergo as they participate in these activities. Citizen science practitioners and program developers stand to benefit from increased understanding of these experiences in terms of their capacity to enhance environmental education. Such increased understanding of the implications of citizen science may also promote the development of sustainability education. This chapter synthesizes insights from existing literature, policy documents and practical projects to explore the pedagogic potential of the convergence of citizen science and environmental education. The chapter concludes that progressive evaluation approaches are needed to complement what is an emergent field.

scholarly journals Performance of Players and Data Quality in a Citizen Science Casual Game

2017 ◽  
Author(s):  
Igor Stankovic ◽  
María Postigo Camps ◽  
Daniel Cuadrado Sánchez ◽  
Miguel A . Luengo - Oroz ◽  
Marisa Ponti
Keyword(s):  
Data Quality ◽  
Citizen Science ◽  
Main Concern ◽  
Standard Position ◽  
Level Data ◽  
Games With A Purpose ◽  
Typical Performance ◽  
Action Projects ◽  
The Individual ◽  
Casual Game

Background: Citizen science games are a type of Games with a Purpose (GWAPs), whose aim is to harness the skills of volunteers for solving scientific problems or contributing to action projects, where citizens intervene in social concerns. Employing games to collect data, classify images or even solve major scientific problems is a relatively new but growing phenomenon in citizen science. A main concern in citizen science is to ensure data quality. As games can be seen as having adverse effects on data quality, it is important to understand how citizen scientists produce data using games, how accurate this data can be, and whether and how games influence data quality. Objective: The objective of this study was to evaluate the performance of individual players’ data quality in MalariaSpot, a citizen science casual game in which volunteers are tasked with detecting parasites in digitized blood sample images.Methods: We used descriptive statistics to analyze a subset of the gameplays recorded and stored in the MalariaSpot database, comparing its clicks to the Gold Standard position of the parasites. This subset includes 15,546 gameplays played over 38 known images that correspond to 97,200 clicks from 1,278 different players. Gameplays have been played via the Android and iOS applications and via the web version of the game. Images were acquired in three different locations and therefore sample preparation have been done by different lab technicians. Two distinct technologies were used for sample digitalization.Results: The overall values for sensibility, specificity, and accuracy of the individual gameplays for the 38 images are 0.82, 0.60, and 0.29 respectively. High presence of parasites in an image makes it easier for players to detect them as their structures tend to look alike and can be compared. Being a simple casual game, the learning curve is very fast and after few minutes, players attend their typical performance level. Data quality is considerably lower in images acquired with mobile phones coupled to the microscope ocular compared to those digitized with standardized digitalization technologies. Conclusions: The results indicate that data quality is influenced by the game, the technologies for image digitalization and the sampling preparation.

scholarly journals Organizationally based citizen science: considerations for implementation

2020 ◽  
Vol 19 (03) ◽  
pp. A01
Author(s):  
Ashley A. Anderson ◽  
Elizabeth Williams ◽  
Marilee Long ◽  
Ellison Carter ◽  
John Volckens
Keyword(s):  
Citizen Science ◽  
Communication Channels ◽  
Organizational Factors ◽  
Organizational Setting ◽  
Input Process ◽  
Organizational Contexts ◽  
Science Approach ◽  
Process Output ◽  
Theoretical Paper ◽  
The Individual

This theoretical paper proposes a framework for how citizen science can be adapted to organizational contexts. Using an “input, process, output” approach, this model proposes organizational factors (e.g., communication channels and styles, and organizational structure) that should be considered when choosing among citizen science approaches (e.g., contributory, collaborative, co-created). The essay identifies possible outcomes for the individual, organization, and larger sector from employing a citizen science approach within an organizational setting.

scholarly journals Smartloss: A Personalized Mobile Health Intervention for Weight Management and Health Promotion

2016 ◽  
Vol 4 (1) ◽  
pp. e18
Author(s):  
Corby K Martin ◽  
L. Anne Gilmore ◽  
John W Apolzan ◽  
Candice A Myers ◽  
Diana M Thomas ◽  
...  
Keyword(s):  
Weight Loss ◽  
Body Weight ◽  
Behavior Change ◽  
Mobile Phone ◽  
Weight Management ◽  
Mobile Phones ◽  
Mobile Health ◽  
Treatment Fidelity ◽  
Health Improvement ◽  
The Individual

Background Synonymous with increased use of mobile phones has been the development of mobile health (mHealth) technology for improving health, including weight management. Behavior change theory (eg, the theory of planned behavior) can be effectively encapsulated into mobile phone-based health improvement programs, which is fostered by the ability of mobile phones and related devices to collect and transmit objective data in near real time and for health care or research professionals and clients to communicate easily. Objective To describe SmartLoss, a semiautomated mHealth platform for weight loss. Methods We developed and validated a dynamic energy balance model that determines the amount of weight an individual will lose over time if they are adherent to an energy intake prescription. This model was incorporated into computer code that enables adherence to a prescribed caloric prescription determined from the change in body weight of the individual. Data from the individual are then used to guide personalized recommendations regarding weight loss and behavior change via a semiautomated mHealth platform called SmartLoss, which consists of 2 elements: (1) a clinician dashboard and (2) a mobile phone app. SmartLoss includes and interfaces with a network-connected bathroom scale and a Bluetooth-connected accelerometer, which enables automated collection of client information (eg, body weight change and physical activity patterns), as well as the systematic delivery of preplanned health materials and automated feedback that is based on client data and is designed to foster prolonged adherence with body weight, diet, and exercise goals. The clinician dashboard allows for efficient remote monitoring of all clients simultaneously, which may further increase adherence, personalization of treatment, treatment fidelity, and efficacy. Results Evidence of the efficacy of the SmartLoss approach has been reported previously. The present report provides a thorough description of the SmartLoss Virtual Weight Management Suite, a professionally programmed platform that facilitates treatment fidelity and the ability to customize interventions and disseminate them widely. Conclusions SmartLoss functions as a virtual weight management clinic that relies upon empirical weight loss research and behavioral theory to promote behavior change and weight loss.

scholarly journals Wine Tourism After The Direct Shipment Revolution: Implications And A Proposed Methodological Framework

2011 ◽  
Vol 5 (2) ◽  
Author(s):  
Martin A. Goldberg ◽  
James Murdy
Keyword(s):  
United States ◽  
New York ◽  
Supreme Court ◽  
United States Supreme Court ◽  
The United States ◽  
United States Supreme ◽  
State Laws ◽  
Wine Tourism ◽  
Interstate Commerce ◽  
The Individual

The United States Supreme Court recently considered challenges to two state laws regarding direct shipment of wine and spirits from out-of-state. Michigan law banned these direct shipments completely, requiring sales from out-of-state to be made through a Michigan wholesaler, even though it permitted direct shipments from within the state. New York law similarly banned direct shipments, although it created a narrow exception for out-of-state wine producers who maintained a place of business within New York. In Granholm v. Heald, the United States Supreme Court considered the constitutionality of these laws in light of the constitutional prohibition against state laws that unreasonably burden interstate commerce. The Court held that these laws did in fact impermissibly discriminate against interstate commerce, and were unconstitutional. It held that a state may permit direct shipments or prohibit them, but it could not create a discriminatory system where in-state direct shipment were permitted but out-of-state shipments were prohibited or burdened with additional costs. This decision left it to the individual state governments to fashion whatever direct shipment laws they wished, as long as the laws did not treat shipments from out of state differently from shipments within the state. As the individual states respond to this mandate, we can see how these new laws will impact wine tourism, actual and Internet travel for the purpose of experiencing and purchasing regional wines.

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