Ethical Issues in Genetic Linkage Studies of Psychiatric Disorders

1992 ◽  
Vol 160 (1) ◽  
pp. 98-102 ◽  
Author(s):  
Joyce Rachel Alexander ◽  
Bernard Lerer ◽  
Miron Baron
Keyword(s):  
Psychiatric Disorders ◽  
Molecular Genetics ◽  
Genetic Linkage ◽  
Ethical Issues ◽  
Research Process ◽  
Linkage Studies ◽  
Ethical Implications ◽  
Recent Advances

Recent advances in molecular genetics have radically altered the prospects for determining the role of heredity in the transmission of major psychiatric disorders. Identification of the actual gene(s) involved, elucidation of their structure, and determination of their products are the steps which theoretically follow successful demonstration of linkage (Gurling, 1985; Baron & Rainer, 1988). Consideration of the ethical issues raised by genetic linkage studies is therefore now of paramount importance. This article focuses on the problems raised by the research process, and not on the ethical implications of the results eventually obtained.

scholarly journals The Ethical Implications of Personal Health Monitoring

2014 ◽  
Vol 5 (2) ◽  
pp. 37-60 ◽  
Author(s):  
Brent Mittelstadt ◽  
Ben Fairweather ◽  
Mark Shaw ◽  
Neil McBride
Keyword(s):  
Health Monitoring ◽  
Ethical Issues ◽  
Personal Health ◽  
Delivery Of Care ◽  
Related Data ◽  
Ethical Implications ◽  
Holistic Understanding ◽  
Health Related ◽  
Personal Health Monitoring

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these are discussed. The system / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient's identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations.1

Familial trichotillomania: role of genetic factors in the determination of subtypes

2013 ◽  
Vol 25 (3) ◽  
pp. 187-190
Author(s):  
Ghaffari Nejad Alireza ◽  
Fariborz Estilaee ◽  
Mohammad M. Sadeghi
Keyword(s):  
Psychiatric Disorders ◽  
Serotonin Receptors ◽  
Genetic Factors ◽  
Genetic Disorder ◽  
Family Members ◽  
Hair Pulling ◽  
Psychiatric Syndrome ◽  
The Family

ObjectivesTrichotillomania (TTM) is a psychiatric syndrome characterised by the inability to control repetitive hair pulling. Psychiatric data reveal that TTM is not usually prevalent among all family members of patients, and so far only one case of familial TTM has been reported.MethodsIn this study, we report a case of familial TTM that afflicted four sisters and discuss the importance of genetic factors in this disorder.ResultsThis report suggests that, similar to many other psychiatric disorders, TTM can be detected in other family members and that genetic factors not only have a significant role in the development of such disorders but also in determination of the disorder subtype. This report also shows that the comorbidities in one member of the family might predict the existence of comorbidities in other members. On the basis of response to medication.Conclusionthe authors suggest that a genetic disorder like polymorphism in serotonin receptors or dopamine can cause such a disorder.

scholarly journals The role of prison nursing: an integrative review

2021 ◽  
Vol 23 (2) ◽  
pp. 76-85
Author(s):  
A Isaac Caro
Keyword(s):  
Nursing Education ◽  
Ethical Issues ◽  
Prison Population ◽  
Quality Care ◽  
Integrative Review ◽  
Ethical Implications ◽  
Review Period ◽  
Training Need

Objectives: To review the scientific literature on the role of the nurse in Penitentiary Institutions through the study of care training and ethical implications when offering quality care to the prison population. Material and method: An integrative review was carried out in Medline, SciELO and LILACS databases. The MeSH and DeCS terms used were: nurse’s role, nursing, nurse, nursing education, prison, ethics, ethical issues, job satisfaction, enfermeria, penitenciaria, health professionals, nursing care. The types of studies included in this work are literature reviews, and qualitative, quantitative and mixed studies. The CASPe tool was used to assess the methodological quality of selected literature. The review period was October, November and December 2019. Results: A total of 264 articles were obtained, of which 98 were chosen after applying filters corresponding to each database and after discarding duplicate articles. The title and abstract of these articles were read and the established selection criteria were applied, to obtain 18 studies. Finally, after critical reading, 15 articles were selected for this work. Discussion: The role of the prison nurse is generally unknown. Nursing undergraduate training in this area is limited, exposing a specific training need, which may help these professionals to deal with ethical issues that they may find in their practice, as well as to improve the quality of care for the prison population.

scholarly journals Motivations for Pursuing Radical Life Extension

2021 ◽  
Author(s):  
◽  
Lucinda April Campbell
Keyword(s):  
Ethical Issues ◽  
Human Life ◽  
Life Extension ◽  
Life And Death ◽  
Ethical Implications ◽  
The Subject ◽  
Radical Life Extension ◽  
The Relationship ◽  
Human Life Span

<p>In bio-ethics, the potential practical and ethical implications of radical life extension are being seriously debated. However, the role of motivation in relation to dramatically increasing the human life span has been largely overlooked. I propose that motivation is a crucial aspect to consider within the radical life extension discourse by conjecturing about why it might appeal and the possible ways it could impact outcomes where it is successfully developed and implemented. I do not thereby present an argument that supports or opposes radical life extension technology. This is ultimately a speculative piece. In exploring the relationship between motivation and radical life extension, I present a conceptual framework called the Thanatophobic and Romantic Motivational Spectrum (TRM Spectrum) designed to assist deeper examination on the subject. It captures what I suggest are two key motivators related to life and death, that is, the fear of death (Thanatophobia) and the “love” of life (Romanticism). The motivational spectrum is then applied to the death penalty versus life imprisonment, and euthanasia and suicide debates to demonstrate how it can be used for analysis of ethical issues in relation to the potential introduction of radical life extension technology.</p>

The legal, governance and ethical implications of involving service users and carers in research

2019 ◽  
Vol 32 (5) ◽  
pp. 818-831
Author(s):  
Virginia Minogue ◽  
Mary Cooke ◽  
Anne-Laure Donskoy ◽  
Penny Vicary
Keyword(s):  
Service User ◽  
Research Study ◽  
Ethical Issues ◽  
Research Process ◽  
Project Team ◽  
Research Management ◽  
Service Users ◽  
Content Type ◽  
Team Members ◽  
Ethical Implications

Purpose Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions. Design/methodology/approach Experiences of engagement as co-applicants in research funding applications, of involvement as research study team members, and as co-researchers were gathered from a range of service user and carer experts. Consultation and a workshop gathered further evidence from a range of stakeholders across the research management community. Findings Service users and carers, who contribute to the research protocol and process, feel a strong sense of responsibility to ensure the high quality of a research study. However, they may be new to their roles, status and key responsibilities when acting as project team members, co-researchers or co-applicants engaging in funding applications. The responsibility of sponsors, grant holding organisations, funders and other members of the research community is to communicate with and support service users and carers in those roles. More needs to be done to understand the contractual, a legal and governance issues and responsibilities that are specific to service user and carer co-applicants, project team members and co-researchers, from both an organisational and individual service user and carer perspective. Practical implications The implications of the findings are to raise awareness of the practical, legal and ethical issues arising from this type of involvement and the potential risks arising from lack of cohesion or understanding. The review also highlights the concerns and barriers service users and carers may find in becoming involved. Originality/value The findings highlight a range of issues for research regulators, sponsors and investigators to consider to ensure service users and carers can fulfil their responsibilities and be supported in doing so.

scholarly journals Operationalising transformative sustainability science through place-based research: the role of researchers

2019 ◽  
Vol 15 (2) ◽  
pp. 467-484 ◽  
Author(s):  
Lummina G. Horlings ◽  
Marta Nieto-Romero ◽  
Siri Pisters ◽  
Katriina Soini
Keyword(s):  
Sustainability Science ◽  
Ethical Issues ◽  
Early Stage ◽  
Research Process ◽  
Multiple Roles ◽  
Transformative Change ◽  
Methodological Choices ◽  
The Subject ◽  
Hands And Feet

AbstractAmong scholars in sustainability science, there is an increasing recognition of the potential of place-based research in the context of transformative change towards sustainability. In this research, researchers may have a variety of roles; these are determined by the researcher’s engagement with the subject, the inherent theoretical, normative and methodological choices he or she makes, the researcher’s ambitions in contributing to change, and ethical issues. This article explores the varied roles of research fellows within the European Marie Curie ITN research program on sustainable place-shaping (SUSPLACE). By analysing 15 SUSPLACE projects and reflecting on the roles of researchers identified by Wittmayer and Schäpke (Sustain Sci 9(4):483–496, 2014) we describe how the fellows’ theoretical positionality, methods applied, and engagement in places led to different research roles. The methodology used for the paper is based on an interactive process, co-producing knowledge with Early Stage Researchers (fellows) of the SUSPLACE consortium. The results show a range of place meanings applied by the fellows. Varied methods are used to give voice to participants in research and to bring them together for joint reflection on values, networks and understandings, co-creating knowledge. Multiple conceptualisations of ‘sustainability’ were used, reflecting different normative viewpoints. These choices and viewpoints resulted in fellows each engaging in multiple roles, exploring various routes of sustainable place-shaping, and influencing place-relations. Based on our findings we introduce a framework for the ‘embodied researcher’: a researcher who is engaged in research with their ‘brain, heart, hands and feet’ and who integrates different roles during the research process.

scholarly journals Executive Dysfunction and Language Deficits in a Pediatric Patient with OCD and MDD with Suicidality

2019 ◽  
Vol 2019 ◽  
pp. 1-3
Author(s):  
Melissa Yuan
Keyword(s):  
Executive Function ◽  
Psychiatric Disorders ◽  
Pediatric Patient ◽  
Executive Dysfunction ◽  
Language Deficits ◽  
Suicidal Thoughts ◽  
Neuropsychological Measures ◽  
Symptom Domains

The role of neuropsychiatric testing in psychiatric disorders is becoming more prominent. Neuropsychological measures that are similar across symptom domains and phenomena such as suicidality may help clinicians guide treatment and tailor therapies to the patient in the most effective way possible. We report the case of a 16-year-old girl who presented with bizarre, intrusive suicidal thoughts in the setting of OCD and MDD. This case is unusual in that we have accurate neuropsychological determination of our patient’s language and executive function deficits, and we propose a link between them and her expression of suicidality in the context of OCD and MDD.

scholarly journals Motivations for Pursuing Radical Life Extension

2021 ◽  
Author(s):  
◽  
Lucinda April Campbell
Keyword(s):  
Ethical Issues ◽  
Human Life ◽  
Life Extension ◽  
Life And Death ◽  
Ethical Implications ◽  
The Subject ◽  
Radical Life Extension ◽  
The Relationship ◽  
Human Life Span

<p>In bio-ethics, the potential practical and ethical implications of radical life extension are being seriously debated. However, the role of motivation in relation to dramatically increasing the human life span has been largely overlooked. I propose that motivation is a crucial aspect to consider within the radical life extension discourse by conjecturing about why it might appeal and the possible ways it could impact outcomes where it is successfully developed and implemented. I do not thereby present an argument that supports or opposes radical life extension technology. This is ultimately a speculative piece. In exploring the relationship between motivation and radical life extension, I present a conceptual framework called the Thanatophobic and Romantic Motivational Spectrum (TRM Spectrum) designed to assist deeper examination on the subject. It captures what I suggest are two key motivators related to life and death, that is, the fear of death (Thanatophobia) and the “love” of life (Romanticism). The motivational spectrum is then applied to the death penalty versus life imprisonment, and euthanasia and suicide debates to demonstrate how it can be used for analysis of ethical issues in relation to the potential introduction of radical life extension technology.</p>

scholarly journals The state of the responsible research and innovation programme

2019 ◽  
Vol 17 (2) ◽  
pp. 145-166
Author(s):  
George Inyila Ogoh ◽  
N. Ben Fairweather
Keyword(s):  
Intellectual Property ◽  
Ethical Issues ◽  
Social Science Research ◽  
Research Process ◽  
Responsible Research And Innovation ◽  
Content Type ◽  
Ethical Implications ◽  
Research And Innovation ◽  
Horizon Scanning ◽  
Responsible Research

Purpose Many of the ethical issues of additive manufacturing (AM) are not well known or understood, and there remains a policy vacuum that needs to be addressed. This paper aims to describe an approach that has been applied successfully to other emerging technologies, referred to as the responsible research and innovation (RRI) framework programme. A case is then made for the application of this approach in the AM industry with an illustration of how it might be used. Design/methodology/approach The research uses an RRI approach referred to as AREA, an acronym for Anticipate, Reflect, Engage and Act, to assess the ethical implications of AM. For the anticipation phase, horizon scanning was done to explore the ethical issues of AM based on extant literature, while reflective analysis was carried out all through the work to reflect on the data being collected and the research process. The engage phase involved interviews with five participants from small- and medium-sized enterprises (SMEs) involved in 3D printing. Findings The findings indicate that although AM appears to pose a threat to intellectual property rights, many in the industry do not care about this issue. As AM becomes mainstream, intellectual property will likely become a big problem. Also, very little is known about the health impacts of AM. This study shows that AM can be hazardous. Research limitations/implications Only users at SME level were sampled. Other researchers might test the usefulness of AREA at the enterprise level. Practical implications The research demonstrates how the AREA framework may be useful in information systems and social science research by enabling a more anticipatory and reflective research process. Originality/value The paper responds to the need for a novel approach to identifying ethical issues of AM.

Oxford Handbook of Online Intermediary Liability

2020 ◽  
Keyword(s):  
Ethical Issues ◽  
Service Providers ◽  
Fundamental Rights ◽  
Social Challenges ◽  
Ethical Implications ◽  
Key Factor ◽  
Informational Environment ◽  
Intermediary Liability ◽  
Online Intermediary

The theoretical—and market—background against which the intermediary liability debate developed has changed considerably since the first appearance of online intermediaries almost two decades ago. These changes have been reflected—or will soon most likely be reflected—in changing policy approaches. The role of Online Service Providers (OSPs) is unprecedented for their capacity to influence the informational environment and users’ interactions within it. The ethical implications of OSPs’ role in contemporary information societies are raising unprecedented social challenges. The decisions made by these platforms increasingly shape contemporary life. Therefore, whether and when access providers and communications platforms such as Google, Twitter, and Facebook are liable for their users’ online activities is a key factor that affects innovation and fundamental rights. There are emerging legal, policy, and ethical issues facing online intermediaries that have so far received various inconsistent answers even within the same jurisdiction. To better understand the heterogeneity of the international online intermediary liability regime, The Oxford Handbook of Online Intermediary Liability is designed to provide a comprehensive, authoritative, and ‘state-of-the-art’ discussion of this topic. This book will review fundamental legal issues in online intermediary liability, while also describing advances in intermediary liability theory and identifying recent policy trends.

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