scholarly journals Becoming and being a biobank donor: The role of relationships and ethics

PLoS ONE ◽  
2020 ◽  
Vol 15 (11) ◽  
pp. e0242828
Author(s):  
Signe Mezinska ◽  
Jekaterina Kaleja ◽  
Ilze Mileiko
Keyword(s):  
Informed Consent ◽  
Ethical Issues ◽  
Family Members ◽  
Research Subjects ◽  
Structured Interviews ◽  
Research Results ◽  
General Data Protection Regulation ◽  
Related Data ◽  
Research Findings

Relational aspects, such as involvement of donor’s relatives or friends in the decision-making on participation in a research biobank, providing relatives’ health data to researchers, or sharing research findings with relatives should be considered when reflecting on ethical aspects of research biobanks. The aim of this paper is to explore what the role of donor’s relatives and friends is in the process of becoming and being a biobank donor and which ethical issues arise in this context. We performed qualitative analysis of 40 qualitative semi-structured interviews with biobank donors and researchers. The results show that relatedness to relatives or other types of close relationships played a significant role in the donors’ motivation to be involved in a biobank, risk-benefit assessment, and decisions on sharing information on research and its results. Interviewees mentioned ethical issues in the context of sharing relatives’ health-related data for research purposes and returning research findings that may affect their relatives. We conclude that the question of what information on family members may be shared with a biobank by research participants without informed consent of those relatives, and when family members become research subjects, lacks a clear answer and detailed guidelines, especially in the context of the introduction of the European Union’s (EU) General Data Protection Regulation. Researchers in Latvia and EU face ethical questions and dilemmas about returning research results and incidental findings to donors’ relatives, and donors need more information on sharing research results with relatives in the informed consent process.

scholarly journals Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

2021 ◽  
Vol 15 (1) ◽  
Author(s):  
S. Mezinska ◽  
L. Gallagher ◽  
M. Verbrugge ◽  
E.M. Bunnik
Keyword(s):  
Informed Consent ◽  
Neurodevelopmental Disorders ◽  
Cognitive Abilities ◽  
Social Impact ◽  
Mental Health Problems ◽  
Ethical Issues ◽  
Family Members ◽  
Genetic Diagnosis ◽  
Research Participation ◽  
Genomic Research

Abstract Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research participants, and communication of research results. Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper.

Language and identity in East Timor

2008 ◽  
Vol 32 (2) ◽  
pp. 153-180 ◽  
Author(s):  
Kerry Taylor-Leech
Keyword(s):  
Language Policy ◽  
Policy Development ◽  
East Timor ◽  
Language And Identity ◽  
Data Sets ◽  
Structured Interviews ◽  
Student Focus ◽  
Research Findings ◽  
Official Languages

Language choice in the newly independent Republic of East Timor can be usefully examined in the wider context of language policy in multilingual states. The present article reports on ethnographic research investigating official and popular discourses of language and identity in East Timor and the role of past and present language policies and practices in shaping national and social identity. It focuses on the discursive reconstruction of identity through five official instruments of language policy development. Hostile discourses in the Australian and Indonesian press towards the choice of Portuguese (the former colonial language) and Tetum (the endogenous lingua franca) as official languages provided the context for the investigation. A persistent theme in these discourses is that English and/or Indonesian would be preferable choices. The article puts these discourses into perspective by presenting findings from two data sets: (i) the 2004 National Census and (ii) analysis of the discourses of 78 participants in semi-structured interviews and student focus groups. The census shows clear signs of the revival of Portuguese and the reinvigoration of Tetum. It also shows how diverse linguistic identities have become in East Timor. The research findings show that there is less hostility to official language policy than claimed in the Australian and Indonesian press. However, the findings also emphasise the urgent need to reconstruct an inclusive, plurilingual national identity that can encompass diversity.

The Impact on Well-Being of Experiences at Cultural Events

2021 ◽  
Author(s):  
Valentina Gorchakova ◽  
Kenneth F. Hyde
Keyword(s):  
Social Interactions ◽  
Well Being ◽  
Emotional Engagement ◽  
Structured Interviews ◽  
Art Galleries ◽  
Special Events ◽  
Research Findings ◽  
Favourable Environment ◽  
The Impact

Major international cultural exhibitions, often referred to as touring ‘blockbuster’ exhibitions (TBEs), are arguably among the most stimulating and engaging event experiences. The role of orchestrating an experience that is meaningful and memorable has captured the attention of scholars in the events literature over recent decades. The aims of this paper are to re-conceptualise major international cultural exhibitions as special events, present a framework of the experiences these exhibitions generate for visitors, and explore the roles such experiences play in visitor well-being. The study draws on the findings of qualitative research conducted in Australia and New Zealand. Semi-structured interviews were conducted with representatives of art galleries and museums in Melbourne, Canberra, Auckland, and Wellington involved in hosting ‘blockbuster’ exhibitions, as well as representatives of regional cultural, tourism, and events organisations. This paper presents a ‘3Es’ experience realms framework, which comprises the key experiences that a major cultural and arts event generates for visitors: entertainment, enrichment, and emotional engagement. The first realm of the 3Es framework, entertainment, has encountered scepticism in the museum field; however, research findings here corroborate the arguments of those scholars who hold that entertainment may help to engage visitors and facilitate education. Enrichment comprises the creation of a favourable environment for new knowledge to be processed, and the enhancement of knowledge. The third realm is an emotionally engaging experience that results from social interactions, activities, and contemplation of and learning about unique exhibits. The framework demonstrates an interplay of these three major experiential dimensions and visitors’ hedonic and eudaemonic well-being. Exhibition and event organisers can utilise this framework to plan the delivery of memorable experiences for visitors and explore the ways in which their event can be made enjoyable, enriching, and emotionally engaging.

Ethical Issues Surrounding High-Risk Kidney Recipients: Implications for the Living Donor

2007 ◽  
Vol 17 (3) ◽  
pp. 180-182 ◽  
Author(s):  
Jerome F. O'Hara ◽  
Katrina Bramstedt ◽  
Stewart Flechner ◽  
David Goldfarb
Keyword(s):  
Informed Consent ◽  
High Risk ◽  
Ethical Issues ◽  
Family Members ◽  
Transplant Recipients ◽  
Kidney Donor ◽  
Living Kidney Donor ◽  
Kidney Recipients ◽  
Medical Issues ◽  
Donor Transplant

Evaulating patients for living kidney donor transplantation involving a recipient with significant medical issues can create an ethical debate about whether to proceed with surgery. Donors must be informed of the surgical risk to proceed with donating a kidney and their decision must be a voluntary one. A detailed informed consent should be obtained from high-risk living kidney donor transplant recipients as well as donors and family members after the high perioperative risk potential has been explained to them. In addition, family members need to be informed of and acknowledge that a living kidney donor transplant recipient with pretransplant extrarenal morbidity has a higher risk of a serious adverse outcome event such as graft failure or recipient death. We review 2 cases involving living kidney donor transplant recipients with significant comorbidity and discuss ethical considerations, donor risk, and the need for an extended informed consent.

scholarly journals Peran Pengusaha Perempuan UMKM dan Pola Pengeluaran Rumah Tangga pada Situasi Bencana Covid-19

2021 ◽  
Vol 8 (1) ◽  
Author(s):  
Benedicta Evie ◽  
Susy Yunia R. Sanie
Keyword(s):  
Social Role ◽  
Family Members ◽  
Expenditure Patterns ◽  
The Public ◽  
Public Role ◽  
The Social ◽  
Research Findings ◽  
Electricity Costs ◽  
The Cost

Women as assets of Indonesia's human resources have a crucial role in disaster management. This research is descriptive using a qualitative approach that photograph the adjustment of women's activities based on their role in the current Covid disaster. The research findings shows the  informant’s perception that Covid-19 is a disaster, and they are worried, so they try to prevent themselves and their family members from being infected by implementing health protocols. They also provide nutritious food and vitamins as well as a variety of food/drink ingredients that are believed to ward off Covid. Increasing domestic role activities are child care and education. Meanwhile, the public role of economy has undergone adjustments, such as working from home, losing customers or jobs. To be able to survive, adjustments to household expenditure patterns were carried out, namely: increasing the cost of kitchen expenditures, and increase in electricity costs and telephone pulses as the implication of all family members are WFH/SFH online. Reduced expenses: spending on clothes / shoes / bags, cosmetics, and recreation. The social role of the public in this Covid situation is to participate in distributing food to the poor.

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

Considerations for Grief Interventions: Eras of Witnessing with Families

2012 ◽  
Vol 65 (2) ◽  
pp. 107-124 ◽  
Author(s):  
Lorraine M. Thirsk ◽  
Nancy J. Moules
Keyword(s):  
Family Members ◽  
Theoretical Framework ◽  
Therapeutic Interventions ◽  
Grief Counseling ◽  
Philosophical Hermeneutics ◽  
Research Findings ◽  
Therapeutic Encounter ◽  
Family Focus

This article describes research that was conducted to articulate interventions with families experiencing grief. Using an interpretive methodology framed by philosophical hermeneutics allowed for a depth of understanding of these therapeutic conversations. The research findings offer explanations of the role of time in relation to grief, particularly the timing of interventions, and describe the significance of working with multiple family members during therapeutic interventions. This research was unique in that it approached grief counseling with a family focus, the participants were interviewed for this study several years after the therapeutic encounter, and the underlying theoretical framework for the interventions focused on grief as a lifelong, life-changing experience, rather than a finite, pathology-laden event.

scholarly journals PERAN MEDIA KOMUNIKASI DALAM MENINGKATKAN SRADDHA BHAKTI SISWA SEKOLAH MENENGAH ATAS DWIJENDRA DENPASAR

2021 ◽  
Vol 1 (2) ◽  
pp. 90
Author(s):  
I Gusti Agus Wiranata ◽  
I Gusti Ngurah Sudiana ◽  
I Ketut Sudarsana
Keyword(s):  
Communication Media ◽  
Message Content ◽  
Research Subjects ◽  
Structured Interviews ◽  
Sociological Approach ◽  
Generation Z ◽  
Technological Developments ◽  
The Media ◽  
Taking Action

<p><em>Technological developments bring about major changes to communication patterns, including in the world of education. Compared to before, now students consisting of generation Z are more interested in delivering dynamic materials that can be accessed from anywhere. Responding to these challenges, the Hindu-based Dwijendra Denpasar High School (SMA) seeks to optimize the distribution of religious messages through the use of communication media. This study aims to analyze how far the communication media can play a role in improving students' sraddha bhakti. Researchers used three theories, namely Agenda Setting, Mathematical Communication, and Constructivism. This type of research is qualitative descriptive with a sociological approach. The research subjects were the school as communicators and students as communicants. Methods of data collection through participatory observation, structured interviews, document studies, literature studies, and online searches. The results showed that communication media consisting of Dwijendra Community Radio, audio-visual media, and Learning Management System (LMS) had an important role in the distribution of information related to sraddha bhakti. The media has advantages in terms of effectiveness, efficiency, concrete, and motivation. Barriers that arise in the role of communication media consist of technical barriers which include facilities and infrastructure, semantic barriers that include message content, and human barriers that arise from communication actors. The strategies applied by the school to improve the role of communication media include mapping problems, taking action on obstacles that occur, and optimizing the role of communication media using redundancy, canalizing, informative, educational, coercive, and persuasive methods. The evaluation shows that the role of communication media has positive implications for increasing students' knowledge, skills, and attitudes of Sraddha Bhakti.</em></p>

Strengths-Based Social Work

2018 ◽  
pp. 62-81
Author(s):  
Sana Loue
Keyword(s):  
Social Work ◽  
Informed Consent ◽  
Social Worker ◽  
Growth And Development ◽  
Ethical Issues ◽  
Strengths Perspective ◽  
Rigorous Research ◽  
The Social ◽  
Social Worker Role

The strengths-based approach to the provision of social work services is said to rest on a respect for the worth and dignity of every individual and a concern that every individual be able to fulfill his or her potential. The strengths perspective transforms the role of the social worker role from that of an authority to that of a collaborator and seeks to facilitate client identification of internal and external strengths and resources and delineation of goals. Numerous criticisms have been raised about the approach, which has not been standardized in practice and has not been systematically evaluated through rigorous research to ascertain the effects of the approach or its acceptability to clients. As a consequence, numerous ethical issues are raised, including questions relating to client self-determination and informed consent. Additional research is needed to further evaluate the value of this perspective to client growth and development.

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