A serviceable Research Biobank model: Charter of Principles and Biobank Ethics Consultation Service (BECS) as a formal toolkit to promote an expert ethical guidance to biobank research

2021 ◽  
Vol 70 (1) ◽  
pp. 35-53
Author(s):  
Elena Ferioli
Keyword(s):  
Health Care Professionals ◽  
Ethical Issues ◽  
Applied Ethics ◽  
Ethics Consultation ◽  
Ethical Framework ◽  
Future Research ◽  
Medicine Research ◽  
Biobank Research ◽  
Institutional Review ◽  
Willingness To Use

The complexity of biobank research has recently increased generating a number of novel ethical issues. In recent years the University of Insubria is committed to provide specific training programs in Bioethics, Applied Ethics and Clinical Ethics aimed to face to critical topics related to medicine, research and biobanking. Actually we design the Insubria Biobank as a research infrastructure with an appropriate Ethical Framework and responsible for the custody of biospecimens and data according to a model of Charitable Trust. So to answer certain questions is crucial: How could biobank respect the trust placed in it? What resources could promote the goals of the biobank? Do professionals require a specific ethical training? This credit of trust must be fed and confirmed by the ethical choices of the biobank and ensuring maximum transparency and traceability of decisions. The aim of the Insubria Biobank is to become an ethical subject to secure the public trust and to define the ethics criteria to be made public and to which the biobank will comply. In our model we propose the prospective involved parties that could guarantee the achievement of this goal: Informed Consent, Charter of Principles and Biobank Ethics Consultation Services (BECS). Our purpose is to offer a Charter of Principles and BECS to help scientists, health care professionals, patients, donors, institutional review board and policymakers, better navigate the ethical issues in biobanking. An exploratory survey to identify the willingness to use BECS represent our future research plan.

scholarly journals An Ethical Framework for the Design, Development, Implementation, and Assessment of Drones Used in Public Healthcare

2020 ◽  
Vol 26 (5) ◽  
pp. 2867-2891 ◽  
Author(s):  
Dylan Cawthorne ◽  
Aimee Robbins-van Wynsberghe
Keyword(s):  
Artificial Intelligence ◽  
Ethical Issues ◽  
Applied Ethics ◽  
Human Values ◽  
Ethical Principles ◽  
Ethical Framework ◽  
Public Healthcare ◽  
Social Experiment ◽  
Design Development ◽  
Ethical Guidelines

Abstract The use of drones in public healthcare is suggested as a means to improve efficiency under constrained resources and personnel. This paper begins by framing drones in healthcare as a social experiment where ethical guidelines are needed to protect those impacted while fully realizing the benefits the technology offers. Then we propose an ethical framework to facilitate the design, development, implementation, and assessment of drones used in public healthcare. Given the healthcare context, we structure the framework according to the four bioethics principles: beneficence, non-maleficence, autonomy, and justice, plus a fifth principle from artificial intelligence ethics: explicability. These principles are abstract which makes operationalization a challenge; therefore, we suggest an approach of translation according to a values hierarchy whereby the top-level ethical principles are translated into relevant human values within the domain. The resulting framework is an applied ethics tool that facilitates awareness of relevant ethical issues during the design, development, implementation, and assessment of drones in public healthcare.

scholarly journals Ethical Issues in Addressing Social Media Posts About Suicidal Intentions During an Online Study Among Youth: Case Study

2018 ◽  
Vol 5 (2) ◽  
pp. e33 ◽  
Author(s):  
Sean D Young ◽  
Renee Garett
Keyword(s):  
Social Media ◽  
Undergraduate Students ◽  
Ethical Issues ◽  
Future Research ◽  
Ethical Practices ◽  
Online Study ◽  
Institutional Review ◽  
Health Related ◽  
Receive Treatment

Due to the popularity of social media, researchers are increasingly conducting studies that monitor and analyze people’s health-related social media conversations. Because social media users can post about any topic at any time, no known best ethical practices exist as to whether and how to monitor participants’ posts for safety-related issues that might be unrelated to the study, such as expressions of suicidal intentions. This is a case study during a social media-based study on sleep and activity among freshman undergraduate students, where we by chance noticed that a student was using social media to express suicidal intentions. Although we connected the student to student psychological services in order to receive treatment, we encountered a number of barriers that initially prevented this from occurring, such as institutional review board and regulatory practices related to lack of experience with these newer types of studies. We discuss the implications of this experience for future research.

scholarly journals Ethical Issues in Addressing Social Media Posts About Suicidal Intentions During an Online Study Among Youth: Case Study (Preprint)

2017 ◽  
Author(s):  
Sean D Young ◽  
Renee Garett
Keyword(s):  
Social Media ◽  
Undergraduate Students ◽  
Ethical Issues ◽  
Future Research ◽  
Ethical Practices ◽  
Online Study ◽  
Institutional Review ◽  
Health Related ◽  
Receive Treatment

UNSTRUCTURED Due to the popularity of social media, researchers are increasingly conducting studies that monitor and analyze people’s health-related social media conversations. Because social media users can post about any topic at any time, no known best ethical practices exist as to whether and how to monitor participants’ posts for safety-related issues that might be unrelated to the study, such as expressions of suicidal intentions. This is a case study during a social media-based study on sleep and activity among freshman undergraduate students, where we by chance noticed that a student was using social media to express suicidal intentions. Although we connected the student to student psychological services in order to receive treatment, we encountered a number of barriers that initially prevented this from occurring, such as institutional review board and regulatory practices related to lack of experience with these newer types of studies. We discuss the implications of this experience for future research.

scholarly journals AAN position statement: Ethical issues in clinical research in neurology

Neurology ◽  
2020 ◽  
Vol 94 (15) ◽  
pp. 661-669
Author(s):  
Benjamin Tolchin ◽  
Robin Conwit ◽  
Leon G. Epstein ◽  
James A. Russell ◽  
Keyword(s):  
Clinical Research ◽  
Ethical Issues ◽  
Research Participant ◽  
Position Statement ◽  
Ethical Framework ◽  
International Studies ◽  
Nuremberg Code ◽  
Institutional Review ◽  
Replication Crisis ◽  
Human Participants

This update to the American Academy of Neurology’s 1998 position statement endeavors to provide guidance for the consistent ethical conduct and review of neurologic research involving human participants. It does so by outlining a widely used ethical framework of 7 principles derived from the foundational documents of modern bioethics, including the Nuremberg Code, the World Medical Association’s Declaration of Helsinki, the Belmont Report, and the US Department of Health and Human Service’s Common Rule. The position statement then applies this principle-based framework to analyze and produce recommendations for the management of common and important ethical issues encountered in neurologic clinical research. These include institutional review board oversight, equitable research participant inclusion, cognitive impairment in research participants, international studies, the replication crisis, and genetic testing and modification.

scholarly journals INFORMATION ETHICS AS A NECESSARY ELEMENT OF THE REGULATION OF THE MODERN INFORMATION SOCIETY

2021 ◽  
pp. 46-50
Author(s):  
M. I. Korobko
Keyword(s):  
Information And Communication Technologies ◽  
Information Society ◽  
Ethical Issues ◽  
Technological Development ◽  
Applied Ethics ◽  
Information Ethics ◽  
Modern World ◽  
Future Research ◽  
Moral Regulation ◽  
Modern Information

The article is devoted to the analysis of the importance of information ethics in the active development of information and communication technologies. Active research on the issues of cyberspace has been conducted since the second half of the ХХth century. These studies are becoming more intensive every year. Many scientists are interested in analysis of these issues because communication plays the fundamental role in our dynamic modern world. Modern telecommunication technologies and, first of all, the global Internet, are one of the most important factors in the development of the world community, which has a decisive influence on the social, political, economic and socio-cultural spheres. And the global pandemic Covid-19 since 2020 has brought these issues to the forefront of socio-humanitarian research. The information space of the Internet, which has already become the main infrastructure of social communication at the local and global levels, is a relatively new cultural phenomenon. It is obvious that a clear and effective system of moral regulation in this area has not yet developed. This space provides a person with unprecedented opportunities in terms of personal freedom, challenging traditional moral attitudes. Of course, this raises many ethical issues, both general and applied, related to the spread of coercive and aggressive Internet advertising, pornography, violence, intrusion, privacy, and many other aspects. Computer technologies are not neutral. They are filled with human, cultural and social values. These values can be predicted and taken into account, they can appear and evolve after many trials and errors. In our multicultural world conflicting value system can often arise. Future research needs to do as much as possible to create a broader and more promising concept of what it means to be human in the stream of transformations that exist today. The solution of certain problems in information ethics is different depending on who solves these problems. All dilemmas and problems within the framework of the considered direction of applied ethics are open, and no one can give an exact answer to the questions yet. Thus, since in the modern information society there is a direct relationship between the intensity of technological development and the growth of crises in the field of moral values and spiritual culture, information ethics already makes a serious claim to the moral regulation of human behaviour.

Using Biomedical Ethics Model to Explore Use of Postmortem Specimens in Tissue Research

2016 ◽  
Vol 3 (1) ◽  
pp. 234-237
Author(s):  
Stacy A. Drake ◽  
Erica T. Yu
Keyword(s):  
Ethical Issues ◽  
Biomedical Ethics ◽  
Human Tissues ◽  
Next Of Kin ◽  
Policy Makers ◽  
Institutional Review ◽  
Tissue Procurement ◽  
Tissue Research ◽  
Death Investigation ◽  
Medicolegal Death Investigation

Researchers often have a need to conduct human tissue research using postmortem specimens. Medicolegal death investigation organizations are untapped areas for obtaining postmortem human tissues. Because death investigation organizations are not required by law to conduct or support research, an ethical dilemma exists in whether or not researchers should use cadaver tissues for research purposes. This paper analyzes the ethical issues of using human tissues through discussion of principles of biomedical ethics, respect for autonomy, nonmaleficence, beneficence, and justice. Policy makers, organ and tissue procurement organizations, medicolegal death investigation organizations, and scientists should be aware of these principles when considering researchers requests. The authors conclude that with Institutional Review Board approval and next of kin consent, there are prevailing reasons for using postmortem tissue for research.

The Changing Nature of Knowledge and Service Work in the Age of Intelligent Machines

2020 ◽  
pp. 343-368
Author(s):  
Crispin Coombs ◽  
Donald Hislop ◽  
Stanimira Taneva ◽  
Sarah Barnard
Keyword(s):  
Ethical Issues ◽  
Work Practice ◽  
Academic Disciplines ◽  
Service Work ◽  
Future Research ◽  
Human Capabilities ◽  
Academic Knowledge ◽  
Intelligent Machines ◽  
Technological Developments ◽  
The Impact

One of the most significant recent technological developments concerns the application of intelligent machines to jobs that up to now have been considered safe from automation. These changes have generated considerable debate regarding the impacts that the widespread adoption of intelligent machines could have on the nature of work. This chapter provides a thematic review, across multiple academic disciplines, of the current state of academic knowledge regarding the impact of intelligent machines on knowledge and service work. Adopting a work-practice perspective, the chapter reviews the extant literature concerning changing relations between workers and intelligent machines, the adoption and acceptance of intelligent machines, and ethical issues associated with greater machine human collaboration. A key finding is that much of the research discusses intelligent machines complementing and extending human capabilities rather than removing humans from work processes. The concept of augmentation of humans and human work, rather than wholesale replacement from automation, flows through the literature across a range of domains. The chapter concludes with a discussion of the main gaps in existing knowledge and ways in which future research may provide a deeper understanding of how people (currently and in the near future) experience intelligent machines in their day-to-day work practice. These include the need for multi-disciplinary research, the role of contexts, the need for more and better empirical research, the changing relationships between humans and intelligent machines, the adoption and acceptance of the technology, and ethical issues.

Ethical Issues in Clinical Psychology

2010 ◽  
pp. 183-210
Author(s):  
Kenneth S. Pope
Keyword(s):  
Clinical Psychology ◽  
Ethical Decision ◽  
Ethical Decision Making ◽  
Ethical Issues ◽  
American Psychological Association ◽  
Future Research ◽  
Ethical Problems ◽  
Basic Assumptions ◽  
Ethics Code ◽  
Canadian Psychological Association

This chapter examines how ethical issues are approached differently by two prominent psychological associations, how they are encountered by psychologists, the formal complaints they give rise to, and how they can be approached systematically to avoid missteps. Included are basic assumptions about ethics; the unique approaches to developing a ethics code taken by the American Psychological Association (APA) and the Canadian Psychological Association (CPA), and what each of these two codes provides; empirical data about what ethical problems psychologists encounter and what formal complaints they face; four major sets of ethical issues that are particularly complex and challenging (confidentiality, informed consent, competence, and boundaries); an area of major controversy (clinical psychology and national security); steps in ethical decision-making; and four possible lines of future research.

scholarly journals Applied sport science and medicine of women’s rugby codes: a systematic-scoping review and consensus on future research priorities protocol

2021 ◽  
Vol 7 (3) ◽  
pp. e001108
Author(s):  
Omar Heyward ◽  
Stacey Emmonds ◽  
Gregory Roe ◽  
Sean Scantlebury ◽  
Keith Stokes ◽  
...  
Keyword(s):  
Scoping Review ◽  
Research Priorities ◽  
Consensus Method ◽  
Future Research ◽  
Delphi Consensus ◽  
Medicine Research ◽  
Sport Science ◽  
Priority Areas ◽  
Wide Range ◽  
Scoping Reviews

Women’s rugby (rugby league, rugby union and rugby sevens) has recently grown in participation and professionalisation. There is under-representation of women-only cohorts within applied sport science and medicine research and within the women’s rugby evidence base. The aims of this article are: Part 1: to undertake a systematic-scoping review of the applied sport science and medicine of women’s rugby, and Part 2: to develop a consensus statement on future research priorities. This article will be designed in two parts: Part 1: a systematic-scoping review, and Part 2: a three-round Delphi consensus method. For Part 1, systematic searches of three electronic databases (PubMed (MEDLINE), Scopus, SPORTDiscus (EBSCOhost)) will be performed from the earliest record. These databases will be searched to identify any sport science and medicine themed studies within women’s rugby. The Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews will be adhered to. Part 2 involves a three-round Delphi consensus method to identify future research priorities. Identified experts in women’s rugby will be provided with overall findings from Part 1 to inform decision-making. Participants will then be asked to provide a list of research priority areas. Over the three rounds, priority areas achieving consensus (≥70% agreement) will be identified. This study has received institutional ethical approval. When complete, the manuscript will be submitted for publication in a peer-reviewed journal. The findings of this article will have relevance for a wide range of stakeholders in women’s rugby, including policymakers and governing bodies.

scholarly journals Providing trial results to participants in phase III pragmatic effectiveness RCTs: a scoping review

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Hanne Bruhn ◽  
Elle-Jay Cowan ◽  
Marion K. Campbell ◽  
Lynda Constable ◽  
Seonaidh Cotton ◽  
...  
Keyword(s):  
Scoping Review ◽  
Health Care Professionals ◽  
Search Strategy ◽  
Phase Iii ◽  
Future Research ◽  
To Receive ◽  
Emotional Effects ◽  
Trial Participants ◽  
Narrative Description ◽  
Do So

Abstract Background There is an ethical imperative to offer the results of trials to those who participated. Existing research highlights that less than a third of trials do so, despite the desire of participants to receive the results of the trials they participated in. This scoping review aimed to identify, collate, and describe the available evidence relating to any aspect of disseminating trial results to participants. Methods A scoping review was conducted employing a search of key databases (MEDLINE, EMBASE, PsycINFO, and the Cumulative Index to Nursing & Allied Health Literature (CINAHL) from January 2008 to August 2019) to identify studies that had explored any aspect of disseminating results to trial participants. The search strategy was based on that of a linked existing review. The evidence identified describes the characteristics of included studies using narrative description informed by analysis of relevant data using descriptive statistics. Results Thirty-three eligible studies, including 12,700 participants (which included patients, health care professionals, trial teams), were identified and included. Reporting of participant characteristics (age, gender, ethnicity) across the studies was poor. The majority of studies investigated dissemination of aggregate trial results. The most frequently reported mode of disseminating of results was postal. Overall, the results report that participants evaluated receipt of trial results positively, with reported benefits including improved communication, demonstration of appreciation, improved retention, and engagement in future research. However, there were also some concerns about how well the dissemination was resourced and done, worries about emotional effects on participants especially when reporting unfavourable results, and frustration about the delay between the end of the trial and receipt of results. Conclusions This scoping review has highlighted that few high-quality evaluative studies have been conducted that can provide evidence on the best ways to deliver results to trial participants. There have been relatively few qualitative studies that explore perspectives from diverse populations, and those that have been conducted are limited to a handful of clinical areas. The learning from these studies can be used as a platform for further research and to consider some core guiding principles of the opportunities and challenges when disseminating trial results to those who participated.

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