Barriers to Accessing State Data and Approaches to Addressing Them

2017 ◽  
Vol 675 (1) ◽  
pp. 122-137 ◽  
Author(s):  
Robert M. Goerge
Keyword(s):  
Data Security ◽  
Ethical Issues ◽  
The Internet ◽  
Government Services ◽  
Use Of Data ◽  
Data Stewardship ◽  
Computational Resources ◽  
And Control ◽  
Legal And Ethical Issues ◽  
Administrative Datasets

The technical challenges of accessing large administrative datasets are easily addressed with the advances in data security, computational resources, and the Internet. The most vexing barriers are legal and ethical issues, and control of the data by the agencies that generate it. This article describes those issues and promotes the notion that partnerships with the data providers are necessary to facilitate access to researchers, both inside and outside government, but also to provide benefits, in the form of evidence, research, and information to the data providers themselves. Ultimately, training of all stakeholders around the secure and responsible use of data and appropriate data stewardship is necessary to facilitate the increased use of administrative data that is required to develop evidence that will have an impact on government services and programs for individuals and families.

Emerging Ethical Issues in Digital Health Information

2015 ◽  
Vol 24 (3) ◽  
pp. 311-322 ◽  
Author(s):  
ANTHONY E. SOLOMONIDES ◽  
TIM KEN MACKEY
Keyword(s):  
Health Information ◽  
Ethical Issues ◽  
Digital Health ◽  
Well Being ◽  
The Internet ◽  
Online Health Information ◽  
Provenance Information ◽  
And Control ◽  
Health And Well Being ◽  
Health Experts

Abstract:The problems of poor or biased information and of misleading health and well-being advice on the Internet have been extensively documented. The recent decision by the Internet Corporation for Assigned Names and Numbers to authorize a large number of new generic, top-level domains, including some with a clear connection to health or healthcare, presents an opportunity to bring some order to this chaotic situation. In the case of the most general of these domains, “.health,” experts advance a compelling argument in favor of some degree of content oversight and control. On the opposing side, advocates for an unrestricted and open Internet counter that this taken-for-granted principle is too valuable to be compromised, and that, once lost, it may never be recovered. We advance and provide evidence for a proposal to bridge the credibility gap in online health information by providing provenance information for websites in the .health domain.

scholarly journals INSPIRE Hackathons and SmartAfriHub – Roadmap for Addressing the Agriculture Data Challenges in Africa

2021 ◽  
Vol 13 (4) ◽  
pp. 33-48
Author(s):  
Karel Charvát ◽  
◽  
Akaninyene Obot ◽  
Stephen Kalyesubula ◽  
Foteini Zampati ◽  
...  
Keyword(s):  
Agricultural Development ◽  
Food System ◽  
Ethical Issues ◽  
Personal Data ◽  
Digital Innovation ◽  
Use Of Data ◽  
Privacy Laws ◽  
Farmer Organisations ◽  
Legal And Ethical Issues ◽  
Digital Farming

Digital farming holds enormous potential for agricultural development, and giving farmers the tools to boost productivity and profitability. Although the benefits of digitalization are numerous, farmers feel they are not the ones benefiting from the value of data collected on their farms. Several issues were identified as factors restricting farmers from benefiting from data-driven agriculture. From the farmers’ perspective, there is a distinct lack of awareness of the issues surrounding farm data, and the complexity of these issues. This feeds into the imbalance that exists between individual farmers and larger agribusinesses wherein the former lack enough resources to address and analyse the significance of data, and so cannot take advantage of the value in it. There is also limited legislation for the generation, flow, exchange and use of data; where legislation does exist, it is not well understood by farmer organisations. From a policy perspective, moreover, there is very little guidance as to which agricultural data can be considered personal data, and therefore protected by privacy laws. This paper analyses the interactions and effects of the 5 Concepts: Open Agricultural Data, Open-Source Software, Citizen Science, privacy and legal and ethical issues that are assumed to advance the digitalization of African Food System (AFS and the enabling Digital Innovation Hub (DIH) - SmartAfriHub (https://www.smartafrihub.com/home).

Physician Attitudes toward the Regulation of Fetal Tissue Therapies: Empirical Findings and Implications for Public Policy

1993 ◽  
Vol 21 (2) ◽  
pp. 241-249 ◽  
Author(s):  
Michelle A. Mullen ◽  
Frederick H. Lowy
Keyword(s):  
Ethical Issues ◽  
Fetal Tissue ◽  
Physician Attitudes ◽  
Tissue Donation ◽  
Attractive Alternative ◽  
Fetal Tissues ◽  
Use Of Data ◽  
Elective Abortion ◽  
Legal And Ethical Issues ◽  
Difficult Issue

The use of aborted fetal tissues in research and therapy (FTT) has raised exciting possibilities and a host of social, legal and ethical issues. Perhaps the most difficult issue is whether the use of materials from elective abortion can be viewed and weighed separately from the abortion itself, or if in using these tissues there is inherent complicity with the abortion act. Those who oppose FTT claim that there is complicity with the abortion act and liken the use of fetal tissue from abortions to the use of data from the Nazi experiments. Within this lobby are those who claim that the option to donate fetal tissues will make abortion a more attractive alternative for pregnant women, and that there are doctors who will offer fetal tissue donation as a positive incentive to abortion-with the net effect that more abortions will take place.

Additional Scientific Events

2002 ◽  
Vol 8 (I1) ◽  
pp. 24-25
Keyword(s):  
Digital Imaging ◽  
Ethical Issues ◽  
Facility Management ◽  
The Internet ◽  
Specimen Preparation ◽  
Roundtable Discussion ◽  
Quantitative Characterization ◽  
Data Ownership ◽  
Legal And Ethical Issues

Metallographic Specimen Preparation, Organizer: George Vander VoortProblem Solving with the ExpertsAddressing Issues in Digital Imaging for the Microscopist: II, Organizer: Jose MascorroCore Facility Management, Organizer: Debby ShermanTechnologists\' Forum Roundtable Discussion: Legal and Ethical Issues of Data Ownership, Organizer: Jeanette KilliusTechnologists\' Forum Special Topics: Immunology 101: Back to Basics, Organizer: Jeanette KilliusComputer Workshop/Software Exchange and the Internet Cafe, Organizers: Nestor Zaluzec and John MansfieldMicroscopy for Canadian schools—A Discussion of Ways and Means, Organizer: Caroline SchooleyStereology: Quantitative Characterization of Metallic and Ceramic Microstructures Considering Different Grain Shapes, Organizer: Frank Mücklich

Consumer Online Privacy: Legal and Ethical Issues

2000 ◽  
Vol 19 (1) ◽  
pp. 7-19 ◽  
Author(s):  
Eve M. Caudill ◽  
Patrick E. Murphy
Keyword(s):  
Public Policy ◽  
Ethical Issues ◽  
Policy Issue ◽  
The Internet ◽  
Ethical Theories ◽  
Consumer Privacy ◽  
Public Policy Issue ◽  
Ethical Policy ◽  
Privacy Issues ◽  
Legal And Ethical Issues

Consumer privacy is a public policy issue that has received substantial attention over the last thirty years. The phenomenal growth of the Internet has spawned several new concerns about protecting the privacy of consumers. The authors examine both historical and conceptual analyses of privacy and discuss domestic and international regulatory and self-regulatory approaches to confronting privacy issues on the Internet. The authors also review ethical theories that apply to consumer privacy and offer specific suggestions for corporate ethical policy and public policy as well as a research agenda.

Research Participation Experiences of Informants of Suicide and Control Cases

Crisis ◽  
2010 ◽  
Vol 31 (5) ◽  
pp. 238-246 ◽  
Author(s):  
Paul W. C. Wong ◽  
Wincy S. C. Chan ◽  
Philip S. L. Beh ◽  
Fiona W. S. Yau ◽  
Paul S. F. Yip ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Research Participation ◽  
Self Report ◽  
Initial Contact ◽  
Psychological Autopsy ◽  
Autopsy Study ◽  
The People ◽  
And Control ◽  
The Impact

Background: Ethical issues have been raised about using the psychological autopsy approach in the study of suicide. The impact on informants of control cases who participated in case-control psychological autopsy studies has not been investigated. Aims: (1) To investigate whether informants of suicide cases recruited by two approaches (coroners’ court and public mortuaries) respond differently to the initial contact by the research team. (2) To explore the reactions, reasons for participation, and comments of both the informants of suicide and control cases to psychological autopsy interviews. (3) To investigate the impact of the interviews on informants of suicide cases about a month after the interviews. Methods: A self-report questionnaire was used for the informants of both suicide and control cases. Telephone follow-up interviews were conducted with the informants of suicide cases. Results: The majority of the informants of suicide cases, regardless of the initial route of contact, as well as the control cases were positive about being approached to take part in the study. A minority of informants of suicide and control cases found the experience of talking about their family member to be more upsetting than expected. The telephone follow-up interviews showed that none of the informants of suicide cases reported being distressed by the psychological autopsy interviews. Limitations: The acceptance rate for our original psychological autopsy study was modest. Conclusions: The findings of this study are useful for future participants and researchers in measuring the potential benefits and risks of participating in similar sensitive research. Psychological autopsy interviews may be utilized as an active engagement approach to reach out to the people bereaved by suicide, especially in places where the postvention work is underdeveloped.

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