scholarly journals Genomic Research and Data-Sharing

2020 ◽  
Vol 39 (2) ◽  
pp. 341-369
Author(s):  
Stephanie Jowett ◽  
Elizabeth Dallaston ◽  
Belinda Bennett
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Public Trust ◽  
Legal Aspects ◽  
Regulatory Framework ◽  
Genomic Research ◽  
Genomic Information

This article analyses the ethical and legal aspects of data-sharing and genomic research. It begins in Part II with an overview of the nature of genomic information, and whether it is exceptional when compared to other forms of health information. Part III considers the role of data-sharing in genomic research, with the importance of public trust in supporting genomic research considered in Part IV. The Australian regulatory framework for data-sharing in genomic research is considered in Parts V and VI, with reform options discussed in Part VII. The article concludes that advances in genomic research and the complexity of the current regulatory framework make it timely to review Australian laws to ensure that they maintain their relevance for this rapidly developing field of research.

Biobank Participants’ Attitudes Toward Data Sharing and Privacy: The Role of Trust in Reducing Perceived Risks

2021 ◽  
pp. 155626462110552
Author(s):  
T.J. Kasperbauer ◽  
Colin Halverson ◽  
Abby Garcia ◽  
Peter H. Schwartz
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Healthcare System ◽  
Close Reading ◽  
Structured Interviews ◽  
Knowledge Test ◽  
Consent Forms ◽  
Perceived Risks ◽  
Participant Understanding

Biobank participants are often unaware of possible uses of their genetic and health information, despite explicit descriptions of those uses in consent forms. To explore why this misunderstanding persists, we conducted semi-structured interviews and knowledge tests with 22 participants who had recently enrolled in a research biobank. Results indicated that participants lacked understanding of privacy and data-sharing topics but were mostly unconcerned about associated risks. Participants described their answers on the knowledge test as largely driven by their trust in the healthcare system, not by a close reading of the information presented to them. This finding may help explain the difficulties in increasing participant understanding of privacy-related topics, even when such information is clearly presented in biobank consent forms.

scholarly journals The Role of Public Trust and Media in Managing the Dissemination of COVID-19-Related News in Switzerland

2020 ◽  
Vol 1 (1) ◽  
pp. 145-158
Author(s):  
Zhan Liu ◽  
Jialu Shan ◽  
Matthieu Delaloye ◽  
Jean-Gabriel Piguet ◽  
Nicole Glassey Balet
Keyword(s):  
Health Information ◽  
Public Trust ◽  
The Public ◽  
Inaccurate Information ◽  
News Sources ◽  
French Speaking ◽  
The Way

Public trust in health information is essential to ensure that preventative strategies to reduce the transmission of COVID-19 are accepted and followed. This study explored the way Swiss people accessed and consumed news and information about the coronavirus from different channels, and the role media plays in public trust during the pandemic. Based on a study of 442 randomly assigned participants in French-speaking regions, we examined the following four questions: (1) What are the news sources and platforms and how are they used? (2) How does the public rate the trustworthiness of these sources and platforms? (3) To what extent does the public perceive that these sources and platforms are provided inaccurate information? (4) What roles do these sources and platforms play in the pandemic? Implications are discussed in the conclusion based on our findings.

Enhancement of food production quality: the truffle case

2020 ◽  
pp. 587-611 ◽  
Author(s):  
Elena Viganò ◽  
Federico Gori ◽  
Antonella Amicucci
Keyword(s):  
Food Production ◽  
Food Products ◽  
Production Quality ◽  
Regulatory Framework ◽  
Marketing Literature

The central role of quality agri-food production in the promotion of a given territory is actually widely recognized by both the economic and marketing literature and the stakeholders involved in the enhancement process of rural systems. On this basis, this work analyzes one of the finest Italian agri-food products: the truffle. This work tries to point out the main problems characterizing the current regulatory framework, the trade and the production of the Italian truffle sector, emphasizing their causes, consequences and possible solutions.

The role of standardization as a key Tool of Quality Economics in the development of integration of the Eurasian Economic Union

2019 ◽  
pp. 14-19
Author(s):  
V. V. Okrepilov ◽  
A. G. Gridasov
Keyword(s):  
Economic Integration ◽  
Legal Framework ◽  
Regulatory Framework ◽  
International Standards ◽  
Member States ◽  
Scientific Methods ◽  
Goods And Services ◽  
Eurasian Economic Union ◽  
Economic Union

The presented study examines the experience of forming a regulatory framework for the integration of the Eurasian Economic Union (EAEU) member states through the example of standardization as one of the key tools of quality economics.Aim. The study analyzes the major solutions of the EAEU authorities and member countries aimed at increasing the role of standardization in the economic integration of the Union over five years of its existence.Tasks. The authors identify efficient methods for developing standardization for the integration of the EAEU states as well as the most problematic aspects in this field that need to be taken into account in the qualitative strengthening of the Union’s economy.Methods. This study uses general scientific methods of cognition to examine the activities of the EAEU authorities and member states aimed at creating a system for the economic integration of the Union during a period of its transition from separate national markets towards a single (common) market.Results. Over five years of operation in the field of stadardization, the Eurasian Economic Union has created the necessary organizational and legal framework to ensure the successful development of integration processes. The national legislation on standardization has been modernized with allowance for the harmonization of these laws. In the next five-six years, the development of international standards for 40 technical regulations is expected to be completed, which would create a regulatory framework for unhindered interaction between all participants of the single (common) EAEU market. Conclusions. The analysis of activities in the field of standardization reveals a sufficiently thought-out and coordinated policy of the EAEU states in creating the necessary conditions for overcoming legal and administrative barriers in the movement of goods and services within the common economic space of the EAEU.

scholarly journals Mental health professional perspectives on health data sharing: Mixed methods study

2020 ◽  
Vol 26 (3) ◽  
pp. 2067-2082 ◽  
Author(s):  
Adela Grando ◽  
Julia Ivanova ◽  
Megan Hiestand ◽  
Hiral Soni ◽  
Anita Murcko ◽  
...  
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Health Professionals ◽  
Mixed Methods Study ◽  
Qualitative And Quantitative Analysis ◽  
Qualitative And Quantitative ◽  
Patient Comprehension ◽  
Professional Perspectives ◽  
The Impact ◽  
Perceived Reasons

This study explores behavioral health professionals’ perceptions of granular data. Semi-structured in-person interviews of 20 health professionals were conducted at two different sites. Qualitative and quantitative analysis was performed. While most health professionals agreed that patients should control who accesses their personal medical record (70%), there are certain types of health information that should never be restricted (65%). Emergent themes, including perceived reasons that patients might share or withhold certain types of health information (65%), care coordination (12%), patient comprehension (11%), stigma (5%), trust (3%), sociocultural understanding (3%), and dissatisfaction with consent processes (1%), are explored. The impact of care role (prescriber or non-prescriber) on data-sharing perception is explored as well. This study informs the discussion on developing technology that helps balance provider and patient data-sharing and access needs.

Sign in / Sign up

Export Citation Format

Share Document