scholarly journals Credit for and Control of Research Outputs in Genomic Citizen Science

2020 ◽  
Vol 21 (1) ◽  
pp. 465-489
Author(s):  
Christi J. Guerrini ◽  
Jorge L. Contreras
Keyword(s):  
Citizen Science ◽  
Scientific Discovery ◽  
Personal Data ◽  
Genetic Data ◽  
Biomedical Sciences ◽  
Research Subjects ◽  
Human Genomics ◽  
The Public ◽  
Legal Foundations ◽  
And Control

Citizen science encompasses activities with scientific objectives in which members of the public participate as more than passive research subjects from whom personal data or biospecimens are collected and analyzed by others. Citizen science is increasingly common in the biomedical sciences, including the fields of genetics and human genomics. Genomic citizen science initiatives are diverse and involve citizen scientists in collecting genetic data, solving genetic puzzles, and conducting experiments in community laboratories. At the same time that genomic citizen science is presenting new opportunities for individuals to participate in scientific discovery, it is also challenging norms regarding the manner in which scientific research outputs are managed. In this review, we present a typology of genomic citizen science initiatives, describe ethical and legal foundations for recognizing genomic citizen scientists’ claims of credit for and control of research outputs, and detail how such claims are or might be addressed in practice across a variety of initiatives.

scholarly journals Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Christi J. Guerrini ◽  
Meaganne Lewellyn ◽  
Mary A. Majumder ◽  
Meredith Trejo ◽  
Isabel Canfield ◽  
...  
Keyword(s):  
Citizen Science ◽  
Scientific Discovery ◽  
Grey Literature ◽  
Research Process ◽  
Inclusion Criteria ◽  
Biomedical Sciences ◽  
Human Genomics ◽  
Collection Form ◽  
And Control ◽  
Policies And Practices

Abstract Background Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger—and also more likely to conflict with those of institution-based researchers and other stakeholders—as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. Methods We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants’ access to and control over research outputs. Results This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants’ access to research outputs, including datasets and published findings, none supported participants’ control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. Conclusions There are opportunities for citizen science initiatives to incorporate more features that support participants’ access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities.

scholarly journals Citizens' Views on Sharing Their Health Data: the Role of Competence, Reliability and Pursuing the Common Good.

2020 ◽  
Author(s):  
Minerva C Rivas Velarde ◽  
Petros Tsantoulis ◽  
Claudine Burton-Jeangros ◽  
Monica Aceti Aceti ◽  
Pierre Chappuis ◽  
...  
Keyword(s):  
Common Good ◽  
Personal Data ◽  
University Hospitals ◽  
Genetic Sequencing ◽  
The Public ◽  
Research Participants ◽  
Quantitative Results ◽  
Potential Risks ◽  
The University ◽  
And Control

Abstract BackgroundIn this article, we raise several questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted for the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public society regarding predictive oncology, genetic sequencing, and cancer. MethodsThis paper present the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was design for this study. This tool is table designed to allow participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis. Results The results are a compilation of responses from the mechanics of consent tool divided into two sections; the first quantitative results presenting of collective responses regarding attitudes to consent to donate their data by qualitative findings emerged from the discussion amongst participants. Discussion Choice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, meaning they are responsible to accept or refuse trust when it is misplaced or built upon unrealistic expectations. Finally, informed consent is one of the various elements that contribute to conducting ethical research, more needs to be done to strengthen governance and ensure adequate protection to research participants particularly to address issues related to predictive health analytics.

The Napoleonic Tradition

2021 ◽  
pp. 54-74
Author(s):  
B. Guy Peters
Keyword(s):  
Public Sector ◽  
Public Management ◽  
New Public Management ◽  
European Countries ◽  
Administrative System ◽  
Social Actors ◽  
The Public ◽  
New Public ◽  
Legal Foundations ◽  
And Control

Some features of the administrative system in France predate Napoleon and his framing of the French state. But the Napoleonic model of the state remains a crucial means of understanding public administration in France. For example, the emphasis on law as the foundation of administration and of accountability can be seen as Napoleonic. Likewise, although the French state has become more decentralized, the emphasis on uniformity and control from Paris still survives to some extent. That centralization also is related to the relatively weak connections of the French state with social actors, especially when compared to other European countries. As well as serving as the foundation for French administration the Napoleonic model has been dispersed to other countries in Europe such as Italy, Spain, Portugal, and Greece. The legal foundations of the Napoleonic tradition have made it resistant to many contemporary reforms in the public sector, notably those based on New Public Management.

Die öffentlichen Förderbanken in Deutschland

2022 ◽  
Author(s):  
Freya Carolin Siekmann
Keyword(s):  
Financial Crisis ◽  
Business Model ◽  
Banking Supervision ◽  
Legal Policy ◽  
The Public ◽  
Legal Literature ◽  
Legal Foundations ◽  
Development Banks ◽  
And Control ◽  
State Protection

In recent years, public development banks have increasingly become the focus of legal policy, whether in the wake of the financial crisis or, more recently, in the wake of the Corona crisis. The work subjects the public development banks, which have so far been discussed in the legal literature at best in relation to individual issues, to a detailed legal examination, taking into account the various organizational forms and legal foundations as well as the special "business model", which is characterized by the public mandate, the state protection as well as a state influence and control. Finally, the paper deals with the application of banking supervision law to public development banks, taking into account this special business model.

The Effect of Sanctions on Cooperative Behavior: A Study on Medium Trust Individuals in the Context of Corruption

2018 ◽  
Vol 34 (1) ◽  
Author(s):  
Dewi Rosiana ◽  
Achmad Djunaidi ◽  
Indun Lestari Setyono ◽  
Wilis Srisayekti
Keyword(s):  
Logistic Regression ◽  
Public Interest ◽  
Logistic Regression Model ◽  
Cooperative Behavior ◽  
Research Subjects ◽  
Chi Square ◽  
Public Interests ◽  
The Public ◽  
Chi Square Analysis ◽  
Personal Interests

This study aims to describe the effect of sanctions (individual sanctions, collective sanctions, and absence of sanctions) on cooperative behavior of individuals with medium trust in the context of corruption. Both collective sanctions and individual sanctions, are systemic, which means sanctioning behavior is exercised not by each individual but by the system. Cooperative behavior in this context means choosing to obey rules, to reject acts of corruption and to prioritize public interests rather than the personal interests. Conversely, corruption is an uncooperative behavior to the rules, and ignores the public interest and prioritizes personal interests. Research subjects were 62 students. The Chi-Square Analysis was used to see the association between the variables and the logistic regression model was applied to describe the structure of this association. Individual sanction is recommended as punishment to medium trust individuals to promote cooperative behavior in the context of corruption. The results showed that individuals with medium trust had more cooperative behavior.

Implementing Context-Based Learning in Science Instruction: A Study on Science Literacy Improvement within Topics of Earthquake and Flood

2019 ◽  
Author(s):  
Anna Farhiya Ulfah
Keyword(s):  
High School ◽  
Junior High School ◽  
Science Literacy ◽  
Junior High ◽  
Science Instruction ◽  
T Test ◽  
Control Group ◽  
Research Subjects ◽  
Treatment Research ◽  
And Control

The goal of this research is gaining description on science literacy improvement of junior high school students regarding the topics of earthquake and flood as an effect of Contextual Based Learning (CBL) implementation during science instruction. Quasi-experiment serves as the method of this study with non-equivalent control group pre-test post-test design. Jigsaw cooperative learning method functions as the control treatment. Research subjects involve 52 students of grade VII in a state junior high school in Bandung Regency, West Java. Those research subjects are divided into two classes namely experiment class and control class. The instrument used to collect relevant data is science literacy test covering aspects of science content, science competence, and attitude towards science. Two independent sample t-test is applied to analyze the comparison of science literacy improvement reached between experiment and control class. The result of statistical calculation for two independent sample t-test N-gain using version 23 SPSS software shows a significant value of 0.00 < α. 0.05 for all aspects. The findings indicate that CBL implementation during science instruction within topics of earthquake and flood is proven to be valid to improve students’ science literacy compared to jigsaw cooperative model.

Accounting and Control as Mechanisms for Solving Economic Problems as Viewed by Russian Citizens of the Perestroika Era (Based on the Analysis of Letters to the Authorities)

2020 ◽  
pp. 15-28
Author(s):  
Ol’ga D. Popova ◽  
Keyword(s):  
Economic Reforms ◽  
Soviet Economy ◽  
Mikhail Gorbachev ◽  
The Public ◽  
Economic Problems ◽  
Cooperative Movement ◽  
Administrative Reforms ◽  
Regulatory Measures ◽  
And Control ◽  
Boris Yeltsin

This article deals with the public attitude toward the economic reforms of 1989–1990, specifically, the citizens’ suggestions on how to improve the country’s economy. The author analyses previously unpublished letters written by Russian citizens and addressed to the country’s leaders (Boris Yeltsin and Mikhail Gorbachev) or sent to Soviet newspapers. To investigate people’s mental attitudes, the article focuses not only on social polling, but also on emotions, feelings, and thoughts shared by the letterwriters. The author of this article maintains that many citizens feared that the country would be swept away by the avalanche of capitalism and were prejudiced against perestroika-induced innovations. Habitual mental attitudes were undermined by the cooperative movement and private entrepreneurship. Various unrealistic and paradoxical suggestions were not infrequently made by the letter-writers who knew very little, if anything, about market economy. The majority of people suggested that command economy with its bureaucratic flavour should be improved. The analysis shows that Russian citizens’ mental attitudes were predominantly shaped by the notion of a bipolar world, as well as by Vladimir Lenin’s teaching about the socialist state and its role in the accounting and control over the Soviet state. The letters demonstrate that Russian citizens hoped to upgrade the Soviet economy through improvements introduced into the system of accounting and control, through harsher regulatory measures imposed on the economic system, as well as through rationing and strictly supervised distribution of goods. Many people believed that socialism was inviolable and that the Soviet economy could be improved by means of administrative reforms.

Extremes of Temperature

2017 ◽  
Author(s):  
Ann M. Krake
Keyword(s):  
Control Measures ◽  
Temperature Extremes ◽  
Physiological Effects ◽  
Assessment And Evaluation ◽  
The Public ◽  
Adverse Health Effects ◽  
Extreme Cold ◽  
Prevention And Control Measures ◽  
And Control ◽  
Extremes Of Temperature

This chapter covers extremes of temperature conditions, physiological effects, and prevention. All deaths caused by exposure to hot and cold temperature extremes are preventable when proper measures are taken. Described in this chapter are the effects of extreme heat and extreme cold on the health of members of the public, particularly older people and young people, and workers employed in various workplace settings. The differences between heat stress and heat strain are also discussed, as are various regulations governing exposure to temperature extremes. The nature and magnitude of heat- and cold-related conditions and symptoms are described in detail. Final sections of the chapter address various assessment and evaluation tools as well as prevention and control measures. In addition, an appendix describes the hazards related to hyperbaric and hypobaric environments and adverse health effects.

scholarly journals Quantifying Media Effects, Its Content, and Role in Promoting Community Awareness of Chikungunya Epidemic in Bangladesh

Epidemiologia ◽  
2021 ◽  
Vol 2 (1) ◽  
pp. 84-94
Author(s):  
Mst. Marium Begum ◽  
Osman Ulvi ◽  
Ajlina Karamehic-Muratovic ◽  
Mallory R. Walsh ◽  
Hasan Tarek ◽  
...  
Keyword(s):  
Social Media ◽  
Web Based ◽  
Study Objective ◽  
The Public ◽  
Mainstream Media ◽  
Related Information ◽  
Vector Borne ◽  
Media Outlet ◽  
And Control

Background: Chikungunya is a vector-borne disease, mostly present in tropical and subtropical regions. The virus is spread by Ae. aegypti and Ae. albopictus mosquitos and symptoms include high fever to severe joint pain. Dhaka, Bangladesh, suffered an outbreak of chikungunya in 2017 lasting from April to September. With the goal of reducing cases, social media was at the forefront during this outbreak and educated the public about symptoms, prevention, and control of the virus. Popular web-based sources such as the top dailies in Bangladesh, local news outlets, and Facebook spread awareness of the outbreak. Objective: This study sought to investigate the role of social and mainstream media during the chikungunya epidemic. The study objective was to determine if social media can improve awareness of and practice associated with reducing cases of chikungunya. Methods: We collected chikungunya-related information circulated from the top nine television channels in Dhaka, Bangladesh, airing from 1st April–20th August 2017. All the news published in the top six dailies in Bangladesh were also compiled. The 50 most viewed chikungunya-related Bengali videos were manually coded and analyzed. Other social media outlets, such as Facebook, were also analyzed to determine the number of chikungunya-related posts and responses to these posts. Results: Our study showed that media outlets were associated with reducing cases of chikungunya, indicating that media has the potential to impact future outbreaks of these alpha viruses. Each media outlet (e.g., web, television) had an impact on the human response to an individual’s healthcare during this outbreak. Conclusions: To prevent future outbreaks of chikungunya, media outlets and social media can be used to educate the public regarding prevention strategies such as encouraging safe travel, removing stagnant water sources, and assisting with tracking cases globally to determine where future outbreaks may occur.

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