Practice evaluation of biobank ethics and governance: current needs and future perspectives

2018 ◽  
Vol 56 (3) ◽  
pp. 176-185 ◽  
Author(s):  
Holger Langhof ◽  
Johannes Schwietering ◽  
Daniel Strech
Keyword(s):  
Public Involvement ◽  
Scientific Literature ◽  
Data Access ◽  
Ethical Standards ◽  
Ethical Challenges ◽  
Biobank Research ◽  
Ethics Research ◽  
Pubmed Search ◽  
Recommendations For Practice ◽  
Biobank Governance

BackgroundBiobank research faces many ethical challenges. Ethics research aims to develop standards for governance to meet these challenges by elaborating overarching normative principles of medical ethics in the context of biobanking. Most ethical standards are widely agreed on among biobank stakeholders and entail specific governance solutions, for example, adoption of consent procedures. In order to fully meet its goal, every governance solution needs to be implemented, evaluated and, if necessary, adapted and improved in practice. This study reviews the scientific literature on biobank ethics and governance in order to identify studies that specifically focus on practice evaluation of biobank governance.MethodsA PubMed search was carried out. Retrieved literature was categorised and thematically clustered. All studies that focus on practice evaluation were reviewed and their objectives, results, and recommendations for practice summarised.ResultsThe findings show that the majority of studies on biobank ethics and governance are theoretical; only 25 out of 922 studies empirically evaluate biobank governance in practice. The majority of these (14; 59%) focused on informed consent. Six studies (24%) addressed practice evaluation of sample and data access; the rest focused on public involvement, ethics reporting and incidental findings. Other relevant governance areas such as ethics review, priority setting and sample ownership were not addressed.ConclusionIn order to fulfil the ethical goals, more empirical research is needed that provides information on how governance mechanisms perform in practice and what improvements are needed.

scholarly journals The academic viewpoint on Big data and patient data ownership (as seen in the scientific literature)

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
I Mircheva ◽  
M Mirchev
Keyword(s):  
Public Health ◽  
Big Data ◽  
Medical Research ◽  
Information And Communication Technologies ◽  
Patient Information ◽  
Scientific Literature ◽  
Medical Data ◽  
Patient Data ◽  
Academic Community ◽  
Ethical Challenges

Abstract Background Ownership of patient information in the context of Big Data is a relatively new problem, apparently not yet fully understood. There are not enough publications on the subject. Since the topic is interdisciplinary, incorporating legal, ethical, medical and aspects of information and communication technologies, a slightly more sophisticated analysis of the issue is needed. Aim To determine how the medical academic community perceives the issue of ownership of patient information in the context of Big Data. Methods Literature search for full text publications, indexed in PubMed, Springer, ScienceDirect and Scopus identified only 27 appropriate articles authored by academicians and corresponding to three focus areas: problem (ownership); area (healthcare); context (Big Data). Three major aspects were studied: scientific area of publications, aspects and academicians' perception of ownership in the context of Big Data. Results Publications are in the period 2014 - 2019, 37% published in health and medical informatics journals, 30% in medicine and public health, 19% in law and ethics; 78% authored by American and British academicians, highly cited. The majority (63%) are in the area of scientific research - clinical studies, access and use of patient data for medical research, secondary use of medical data, ethical challenges to Big data in healthcare. The majority (70%) of the publications discuss ownership in ethical and legal aspects and 67% see ownership as a challenge mostly to medical research, access control, ethics, politics and business. Conclusions Ownership of medical data is seen first and foremost as a challenge. Addressing this challenge requires the combined efforts of politicians, lawyers, ethicists, computer and medical professionals, as well as academicians, sharing these efforts, experiences and suggestions. However, this issue is neglected in the scientific literature. Publishing may help in open debates and adequate policy solutions. Key messages Ownership of patient information in the context of Big Data is a problem that should not be marginalized but needs a comprehensive attitude, consideration and combined efforts from all stakeholders. Overcoming the challenge of ownership may help in improving healthcare services, medical and public health research and the health of the population as a whole.

Pitfalls in the publication of scientific literature: a road map to manage conflict of interest and other ethical challenges

2011 ◽  
Vol 114 (1) ◽  
pp. 21-26 ◽  
Author(s):  
Alpesh A. Patel ◽  
Peter G. Whang ◽  
Andrew P. White ◽  
Michael G. Fehlings ◽  
Alexander R. Vaccaro
Keyword(s):  
Conflict Of Interest ◽  
Scientific Literature ◽  
Conflicts Of Interest ◽  
Medical Writing ◽  
Data Accuracy ◽  
Ethical Challenges ◽  
Road Map ◽  
Current Article ◽  
Financial Conflicts Of Interest

The process of publishing scientific research can be hampered by potential pitfalls for journals and researchers alike; the definition and determination of authorship, legal documentation, data accuracy, and disclosure of financial conflicts of interest are all examples. In the current article, the authors discuss the challenges related to scientific medical writing and provide updated recommendations for both the prevention and management of these issues.

scholarly journals Community Participiation in Village Development: the Scale of Latvia

2016 ◽  
Vol 4 (1) ◽  
pp. 84-99
Author(s):  
Edgars Pudzis ◽  
Sanda Geipele ◽  
Ineta Geipele
Keyword(s):  
Community Involvement ◽  
Public Involvement ◽  
Local Community ◽  
Historical Data ◽  
Data Access ◽  
Development Planning ◽  
Access Methods ◽  
National Planning ◽  
Planning Framework ◽  
Insight Into

Abstract The research provides an insight into village development planning, as well as considers village planning from the perspective of the national planning framework. Local settings of village development have also been taken into account. The research provides information about possible approaches for local community involvement in development decision-making. The article aims at considering the current situation of the involvement of local communities in the advancement of local territories and at presenting the proposals for public involvement models. Analysis, logical and historical data access methods, induction and deduction have been used in the present research.

scholarly journals Exploring inequalities in health with young people through online focus groups: navigating the methodological and ethical challenges

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Nicholas Woodrow ◽  
Hannah Fairbrother ◽  
Mary Crowder ◽  
Elizabeth Goyder ◽  
Naomi Griffin ◽  
...  
Keyword(s):  
Data Collection ◽  
Focus Groups ◽  
Public Involvement ◽  
Ethical Challenges ◽  
Inequalities In Health ◽  
Content Type ◽  
Participant Engagement ◽  
Sensitive Topics ◽  
Online Focus Groups ◽  
Building Activities

PurposeThe use of online focus groups to explore children and young people's (CYP) perspectives of inequalities in health and associated “sensitive” topics raises important ethical and methodological issues to consider. The purpose of the paper is to discuss lessons learnt from navigating the authors' way through some of the key challenges the authors encountered when researching inequalities in health with CYP through online focus groups.Design/methodology/approachIn the paper, the authors draw on reflections and notes from the fieldwork design, public involvement and engagement (PIE) activities and data collection for their research project.FindingsCollecting data online influenced the authors' ability to develop rapport and relationships with CYP and to provide effective support when discussing sensitive topics. The authors note that building activities to develop rapport with participants during recruitment and data collection and establishing clear support and safeguarding protocols helped navigate challenges of online approaches around effective and supportive participant engagement.Originality/valueThe paper highlights that despite ethical and methodological challenges of conducting online focus groups with CYP on potentially sensitive topics, the adoption of practical steps and strategies before, during and following data collection can facilitate the safe participation of CYP and generate useful and valid data in meaningful and appropriate ways.

scholarly journals Opportunities and challenges in the use of personal health data for health research

2015 ◽  
Vol 23 (e1) ◽  
pp. e42-e48 ◽  
Author(s):  
Matthew J Bietz ◽  
Cinnamon S Bloss ◽  
Scout Calvert ◽  
Job G Godino ◽  
Judith Gregory ◽  
...  
Keyword(s):  
Health Research ◽  
Online Survey ◽  
Qualitative Interviews ◽  
Data Access ◽  
Health Data ◽  
Customer Relationships ◽  
Personal Health ◽  
Convenience Sample ◽  
Ethics Research ◽  
Advance Research

Abstract Objective: Understand barriers to the use of personal health data (PHD) in research from the perspective of three stakeholder groups: early adopter individuals who track data about their health, researchers who may use PHD as part of their research, and companies that market self-tracking devices, apps or services, and aggregate and manage the data that are generated. Materials and Methods: A targeted convenience sample of 465 individuals and 134 researchers completed an extensive online survey. Thirty-five hour-long semi-structured qualitative interviews were conducted with a subset of 11 individuals and 9 researchers, as well as 15 company/key informants. Results: Challenges to the use of PHD for research were identified in six areas: data ownership; data access for research; privacy; informed consent and ethics; research methods and data quality; and the unpredictable nature of the rapidly evolving ecosystem of devices, apps, and other services that leave “digital footprints.” Individuals reported willingness to anonymously share PHD if it would be used to advance research for the good of the public. Researchers were enthusiastic about using PHD for research, but noted barriers related to intellectual property, licensing, and the need for legal agreements with companies. Companies were interested in research but stressed that their first priority was maintaining customer relationships. Conclusion: Although challenges exist in leveraging PHD for research, there are many opportunities for stakeholder engagement, and experimentation with these data is already taking place. These early examples foreshadow a much larger set of activities with the potential to positively transform how health research is conducted.

scholarly journals Evolution of Professional Participants in Russian Securities Market

2019 ◽  
Vol 29 (3) ◽  
pp. 416-424
Author(s):  
Irina Alekseeva ◽  
Ksenia Ovchinnikova
Keyword(s):  
Stock Market ◽  
Financial Market ◽  
Public Involvement ◽  
Scientific Literature ◽  
Regulatory Framework ◽  
Securities Market ◽  
Sharp Decline ◽  
Investment Activity ◽  
Market Participants ◽  
Domestic Stock

The securities market is one of the most important segments of the financial market of any state. The development of the Russian securities market can be judged on the basis of the development of its participants, their evolution. An analysis of today’s economic scientific literature shows an insufficient coverage of the evolution of professional participants in the domestic stock market. The article considers the changes in the composition of professional participants of the securities market, analyzes the regulatory framework that have given rise to these changes. It brings forth the reasons for the changes and expectations of financial market participants from the changes, presents the dynamics of the number of over the period of 2008–2018. The article reveals a sharp decline in the number of professional participants, determines the causes of this trend. It places an emphasis on the significance of including the investment advisors in the ranks of professional participants of the securities market in order to increase public involvement in the investment activity.

scholarly journals CYBERSECURITY OF THE BANKING SYSTEM AND ETHICAL RULES OF THE INTERACTION BETWEEN A MAN AND ARTIFICIAL INTELLIGENCE: ON THE NEED FOR CO-EXISTENCE

Banking law ◽  
2021 ◽  
Vol 1 ◽  
pp. 47-62
Author(s):  
Anna V. Popova ◽  
Keyword(s):  
Artificial Intelligence ◽  
Intelligent Systems ◽  
Banking Sector ◽  
Scientific Literature ◽  
Banking System ◽  
Social Engineering ◽  
Human Interaction ◽  
Ethical Standards ◽  
Economic Relations ◽  
Stage Of Development

The author of the article, based on comparative analysis legal regulations and scientific literature in the field of cybersecurity, comes to the conclusion that at the present stage of development of economic relations, there is an urgent need to establish ethical standards for human interaction and automated intelligent systems based on artificial intelligence. The article analyzes the concept of cybersecurity in its difference from information security; positive and negative features of the use of AI in the banking sector of the economy. The article focuses on social engineering in preventing cyber threats and offers a list of ethical principles in their content constant.

scholarly journals Caring for (Big) Data: An Introduction to Research Methodologies and Ethical Challenges in Digital Migration Studies

2021 ◽  
pp. 1-21
Author(s):  
Marie Sandberg ◽  
Luca Rossi
Keyword(s):  
Big Data ◽  
Large Scale ◽  
Social Activity ◽  
Data Access ◽  
Digital Data ◽  
Data Sets ◽  
Ethical Challenges ◽  
Migration Studies ◽  
Critical Approach ◽  
Migration Research

AbstractDigital technologies present new methodological and ethical challenges for migration studies: from ensuring data access in ethically viable ways to privacy protection, ensuring autonomy, and security of research participants. This Introductory chapter argues that the growing field of digital migration research requires new modes of caring for (big) data. Besides from methodological and ethical reflexivity such care work implies the establishing of analytically sustainable and viable environments for the respective data sets—from large-scale data sets (“big data”) to ethnographic materials. Further, it is argued that approaching migrants’ digital data “with care” means pursuing a critical approach to the use of big data in migration research where the data is not an unquestionable proxy for social activity but rather a complex construct of which the underlying social practices (and vulnerabilities) need to be fully understood. Finally, it is presented how the contributions of this book offer an in-depth analysis of the most crucial methodological and ethical challenges in digital migration studies and reflect on ways to move this field forward.

scholarly journals Applying an Ethical Framework to Herbal Medicine

2018 ◽  
Vol 2018 ◽  
pp. 1-7 ◽  
Author(s):  
Kate Chatfield ◽  
Bahare Salehi ◽  
Javad Sharifi-Rad ◽  
Leila Afshar
Keyword(s):  
Herbal Medicine ◽  
Herbal Medicines ◽  
Ethical Analysis ◽  
Ethical Framework ◽  
Ethical Standards ◽  
Ethical Challenges ◽  
Moral Framework ◽  
First Time ◽  
Structured Approach ◽  
Practical Recommendations

Herbal medicines make a vital contribution to healthcare globally, but from production through to practice, there are ethical challenges that require attention. Ethical challenges are often analysed through application of an ethical framework because this can facilitate a consistent and structured approach. In healthcare, the most commonly used framework over recent decades has been that of the four principles: beneficence, nonmaleficence, autonomy, and justice. However, for various reasons that are explained, this approach to ethical analysis is not the most fitting for the global phenomenon of herbal medicine. In this paper, a relatively new moral framework that is based upon the globally accepted values of care, respect, honesty, and fairness is explored in relation to herbal medicine for the first time. Through application of this framework, the ethical challenges and actions needed to address them become clear, thus resulting in practical recommendations for enhancing ethical standards in herbal medicine.

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