scholarly journals Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations

2020 ◽  
Vol 48 (S1) ◽  
pp. 196-226 ◽  
Author(s):  
Mark A. Rothstein ◽  
John T. Wilbanks ◽  
Laura M. Beskow ◽  
Kathleen M. Brelsford ◽  
Kyle B. Brothers ◽  
...  
Keyword(s):  
Mobile Devices ◽  
Policy Recommendations ◽  
Regulatory Requirements ◽  
Ethical Considerations ◽  
The Public ◽  
Direct To Consumer ◽  
Federal Research ◽  
Research Regulations ◽  
Policy Challenge ◽  
Conducting Research

Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance.

Tanggung Jawab Hukum Penilai Publik terhadap Laporan Penilaian Kegiatan Pengadaan Tanah bagi Pembangunan untuk Kepentingan Umum (Studi Atas Kantor Jasa Penilai Publik Toto Suharto)

2020 ◽  
Vol 2 (1) ◽  
Author(s):  
Gagah Yaumiyya Riyoprakoso ◽  
AM Hasan Ali ◽  
Fitriyani Zein
Keyword(s):  
Future Development ◽  
Public Interest ◽  
Legal Responsibility ◽  
Legal Research ◽  
The Public ◽  
The Government ◽  
Conducting Research ◽  
The Right ◽  
The Relationship ◽  
Systematic Explanation

This study is based on the legal responsibility of the assessment of public appraisal reports they make in land procurement activities for development in the public interest. Public assessment is obliged to always be accountable for their assessment. The type of research found in this thesis is a type of normative legal research with the right-hand of the statue approach and case approach. Normative legal research is a study that provides systematic explanation of rules governing a certain legal category, analyzing the relationship between regulations explaining areas of difficulty and possibly predicting future development. . After conducting research, researchers found that one of the causes that made the dispute was a lack of communication conducted between the Government and the landlord. In deliberation which should be the place where the parties find the meeting point between the parties on the magnitude of the damages that will be given, in the field is often used only for the delivery of the assessment of the compensation that has been done.

Resurrected Bodies

2010 ◽  
Vol 39 (1) ◽  
pp. 3-6 ◽  
Author(s):  
Arlene Macdonald
Keyword(s):  
Public Policy ◽  
Lived Experience ◽  
Organ Transplant ◽  
Transplant Recipients ◽  
Ethical Considerations ◽  
The Public ◽  
Professional Activities ◽  
Faith Traditions ◽  
Anthropological Literature ◽  
Religious Actors

The anthropological literature on transplant, though theoretically and ethnographically rich, does not address religion in any substantial way. And while bio-ethical considerations of transplant regularly address religion, treatments are generally circumscribed to a list of various faith traditions and their stance toward organ transplant. Such a presentation reduces “religion” to the world’s recognized faith traditions, “religious actors” to the official spokespersons of these traditions, and “religious belief” to moral injunctions. The objective of the thesis was to illuminate the prominent place of religion in the lived experience of transplant recipients and donors, in the public policy and professional activities of transplant officials, and in the transplant discourses of North America

Archaeologists and the Dead

2016 ◽  
Keyword(s):  
Historical Context ◽  
Ethical Considerations ◽  
International Context ◽  
The Public ◽  
The Us ◽  
The Dead ◽  
The Many ◽  
The Uk ◽  
The Relationship ◽  
Experience Effect

This volume addresses the relationship between archaeologists and the dead, through the many dimensions of their relationships: in the field (through practical and legal issues), in the lab (through their analysis and interpretation), and in their written, visual and exhibitionary practice--disseminated to a variety of academic and public audiences. Written from a variety of perspectives, its authors address the experience, effect, ethical considerations, and cultural politics of working with mortuary archaeology. Whilst some papers reflect institutional or organizational approaches, others are more personal in their view: creating exciting and frank insights into contemporary issues that have hitherto often remained "unspoken" among the discipline. Reframing funerary archaeologists as "death-workers" of a kind, the contributors reflect on their own experience to provide both guidance and inspiration to future practitioners, arguing strongly that we have a central role to play in engaging the public with themes of mortality and commemoration, through the lens of the past. Spurred by the recent debates in the UK, papers from Scandinavia, Austria, Italy, the US, and the mid-Atlantic, frame these issues within a much wider international context that highlights the importance of cultural and historical context in which this work takes place.

Water Management by Farmers

2018 ◽  
pp. 796-813
Author(s):  
Laurence Smith
Keyword(s):  
Water Management ◽  
Decision Making ◽  
Stakeholder Participation ◽  
Coordination Mechanisms ◽  
Policy Mix ◽  
The Public ◽  
Multifunctional Land Use ◽  
Resource Managers ◽  
Policy Challenge ◽  
Communication And Coordination

Analyzing the public policy challenge of multifunctional land use, for which farmers are required to be food producers, water resource managers and environmental stewards, it is argued that a location-sensitive policy mix is required, consisting of appropriate regulation complemented by advice provision, voluntarism, and well-targeted incentive schemes. The case is further made for adaptive management, local deliberation and stakeholder participation, and hence for governance that is open, delegated, and collaborative. Assessment, planning, and decision making need to be delegated to the most appropriate governmental level and spatial scale to achieve desired outcomes, whilst effective mechanisms for vertical and horizontal coordination of the resulting multilevel and polycentric governance are essential. Hydrographic catchments have significant advantages as spatial units for analysis, planning, coordination, and policy delivery. However, catchment-based working creates further need for cross-level, sector, and scale communication and coordination. Mechanisms for this merit further attention.

scholarly journals Who should be tested in a pandemic? Ethical considerations

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Sven Ove Hansson ◽  
Gert Helgesson ◽  
Niklas Juth
Keyword(s):  
Legal Status ◽  
Careful Consideration ◽  
Medical Services ◽  
Residential Areas ◽  
Test Quality ◽  
Ethical Considerations ◽  
Scarce Resources ◽  
Direct To Consumer ◽  
Strict Regulation ◽  
Consumer Test

Abstract Background In the initial phase of the Covid-19 pandemic, difficult decisions had to be made on the allocation of testing resources. Similar situations can arise in future pandemics. Therefore, careful consideration of who should be tested is an important part of pandemic preparedness. We focus on four ethical aspects of that problem: how to prioritize scarce testing resources, the regulation of commercial direct-to-consumer test services, testing of unauthorized immigrants, and obligatory testing. Main text The distribution of scarce resources for testing: We emphasize the use of needs-based criteria, but also acknowledge the importance of choosing a testing strategy that contributes efficiently to stopping the overall spread of the disease. Commercial direct-to-consumer test services: Except in cases of acute scarcity, such services will in practice have to be allowed. We propose that they should be subject to regulation that ensures test quality and adequate information to users. Testing of unauthorized immigrants, their children and other people with unclear legal status: Like everyone else, these individuals may be in need of testing, and it is in society’s interest to reach them with testing in order to stop the spread of the disease. A society that offers comprehensive medical services to unauthorized immigrants is in a much better position to reach them in a pandemic than a society that previously excluded them from healthcare. Obligatory testing: While there are often strong reasons for universal testing in residential areas or on workplaces, there are in most cases better ways to achieve testing coverage than to make testing mandatory. Conclusion In summary, we propose (1) decision-making primarily based on needs-based criteria, (2) strict regulation but not prohibition of direct-to-consumer test services, (3) test services offered to unauthorized immigrants, preferably as part of comprehensive medical services, and (4) broad outreach of testing services whenever possible, but in general not obligatory testing.

The End of the HIPAA Privacy Rule?

2016 ◽  
Vol 44 (2) ◽  
pp. 352-358 ◽  
Author(s):  
Mark A. Rothstein
Keyword(s):  
21St Century ◽  
Regulatory Action ◽  
Common Rule ◽  
Privacy Rule ◽  
Federal Research ◽  
Incomplete Coverage ◽  
Research Regulations ◽  
Hipaa Privacy Rule ◽  
21St Century Cures Act

The HIPAA Privacy Rule is notoriously weak because of its incomplete coverage, numerous exclusions and exemptions, and limited rights for individuals. The three areas in which it provides the most protection are fundraising, marketing, and research. Provisions of the 21st Century Cures Act, pending in Congress, and the Notice of Proposed Rulemaking to amend the federal research regulations (Common Rule), awaiting final regulatory action, would weaken the privacy protections for research. If these measures are adopted, the HIPAA Privacy Rule would have so little value that it might not be worth the aggravation and burden.

Tracking of Wearable IoT Devices Through WAP Using Intelligent Rule-Based Location Aware Approach

2021 ◽  
Vol 20 (Supp01) ◽  
pp. 2140005
Author(s):  
L. Sai Ramesh ◽  
S. Shyam Sundar ◽  
K. Selvakumar ◽  
S. Sabena
Keyword(s):  
Mobile Devices ◽  
Task Completion ◽  
End User ◽  
Access Points ◽  
The Public ◽  
Location Aware ◽  
Unique Identity ◽  
Iot Devices ◽  
Public Environment ◽  
Specific Scenario

Usage of the internet is increasing in the daily life of humans due to the need for speedy task completion for their daily services. Most of the living time is spent in some indoor environment which provides WiFi which is the basic need of internet connectivity using Wireless Access Points (WAP). Nowadays, most of the devices are IoT-based ones, which connect with the outer world through the access points in the existing environment. The wearable IoT devices may be misplaced somewhere and we need a specific scenario which helps to identify the misplaced mobile devices based on access points where they are connected by their unique identity such as MAC address. Most of the time, unrestricted WiFi access provided in the public environment is used by the end-user. In that scenario, the tracking of misplaced mobile devices is creating an issue when the WiFi is in switch-off mode. This paper proposes a technique for tracking a mobile device by using a location-aware approach with KNN and intelligent rules by tracking the channel accessed by the user to find the misplaced path by examining the device connected WAP positions.

Design Research Strategies for a Total Artificial Heart

2017 ◽  
Vol 61 (1) ◽  
pp. 593-596
Author(s):  
L. Bryant Foster
Keyword(s):  
Participatory Design ◽  
Artificial Heart ◽  
Design Research ◽  
Total Artificial Heart ◽  
Research Strategies ◽  
Regulatory Requirements ◽  
Regulatory Constraints ◽  
Regulatory Submission ◽  
Conducting Research ◽  
Validation Testing

Human factors formative and validation testing have become a part of the regulatory submission process for new medical devices in the U.S. and Europe. However, there are additional design research methods that manufacturers should consider implementing before and during development to ensure their products are safe, usable and desirable. Many manufacturers avoid conducting design research due to regulatory requirements to document adverse events. This paper discusses contextual research and participatory design performed to gather user needs for a new Total Artificial Heart TAH-t) user interface as well as strategies for conducting research with current users to comply with regulatory constraints.

scholarly journals Governing Knowledge: Intellectual Property Management for Development and the Public Interest

2015 ◽  
Vol 66 ◽  
pp. 69-88
Author(s):  
Leonardo Burlamaqui
Keyword(s):  
Intellectual Property ◽  
Public Interest ◽  
Public Domain ◽  
Policy Recommendations ◽  
Public And Private ◽  
The Public ◽  
Private Interests ◽  
Intellectual Property Management ◽  
Analytical Perspective ◽  
The Right

The core point of this paper is the hypothesis that in the field of intellectual property rights and regulations, the last three decades witnessed a big change. The boundaries of private (or corporate) interests have been hyper-expanded while the public domain has significantly contracted. It tries to show that this is detrimental to innovation diffusion and productivity growth. The paper develops the argument theoretically, fleshes it out with some empirical evidence and provides a few policy recommendations on how to redesign the frontiers between public and private spaces in order to produce a more democratic and development-oriented institutional landscape. The proposed analytical perspective developed here, “Knowledge Governance”, aims to provide a framework within which, in the field of knowledge creation and diffusion, the dividing line between private interests and the public domain ought to be redrawn. The paper’s key goal is to provide reasoning for a set of rules, regulatory redesign and institutional coordination that would favor the commitment to distribute (disseminate) over the right to exclude.Keywords: knowledge management, intellectual property, patent, public, interest, public sector, private sector, socioeconomic developmen

scholarly journals What are the objectives of corporate reporting? Sustainable value for who?

2018 ◽  
Vol 12 (1) ◽  
pp. 436-445
Author(s):  
Razvan Hoinaru
Keyword(s):  
Common Good ◽  
Added Value ◽  
Policy Recommendations ◽  
Public Authorities ◽  
The Public ◽  
Corporate Reporting ◽  
Sustainable Value ◽  
Fit For Purpose ◽  
The Common ◽  
Research Show

Abstract Corporate reporting is generally perceived as a type of accounting fit for purpose for the 21 century, taking into consideration not only the traditional shareholders’ needs and views but also stakeholders’. Academic literature tends to over-appreciate the non-financial nature of corporate reporting, forgetting that numbers can have their own narratives, which can be read in between the lines. It is true that numbers present certain uncertainties and an extra level of reporting can provide a better interpretation, in a complementary or continuous manner. The present research looks at the current European Union binding legislation and academic and professional judgements towards it. The ultimate questions to be answered is if corporate reporting is improved information? and whose needs are really served: shareholders, the traditional users of accounts, or stakeholders, always hidden, but intuitively taken into account. Findings of the research show that public good is largely perceived as the duty of private interest, as regulated by the public authorities. This mainly happens as shareholders and whoever puts money at risk still are the primarily user group, but the context and consequences of reporting are wider than before. The approach taken by this paper was first of all to discover inside outs of corporate reporting and secondly to look how industry self-regulators interact with public authorities, for the common good. The added value of the present papers is represented by its policy recommendations presented as conclusions.

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