Article
Hospitality, Leisure, Sport & Tourism
Katherine A. Tamminen, A. Bundon, B. Smith, M. H. McDonough, Z. A. Poucher, M. Atkinson
Summary: This paper aims to provide guidance for researchers in the sport and exercise sciences on engaging in open qualitative research practices, with nine core values identified as considerations. Specific considerations are provided for researchers in areas such as types of data and participant consent. These considerations are intended to help qualitative researchers make informed decisions and plan for implementation of open science practices.
QUALITATIVE RESEARCH IN SPORT EXERCISE AND HEALTH
(2021)
Article
Medicine, Research & Experimental
Tove Godskesen, Joar Bjork, Niklas Juth
Summary: This study explores the ethical challenges encountered by clinical research nurses (CRNs) in obtaining informed consent for clinical research. The findings highlight the threats to voluntariness faced by CRNs, the measures they take to safeguard voluntariness, and the questionable exclusion of certain groups. Time constraints, rushed decisions, and information overload pose challenges for CRNs, while overestimating therapeutic benefits in advanced illness stages can risk voluntariness. Proactive solutions, such as allowing ample decision-making time and supporting terminally ill patients, are outlined. Concerns are also raised about excluding individuals with language barriers or cognitive impairments. This study emphasizes the importance of refining the informed consent process, addressing participation challenges, and ensuring equitable inclusion in clinical studies.
Article
Health Care Sciences & Services
Katja Voit, Tobias Skuban-Eiseler, Marcin Orzechowski, Florian Steger
Summary: Health crises like COVID-19 pose challenges to conducting clinical studies, especially regarding research ethics such as informed consent. This study examines whether proper informed consent procedures were followed in COVID-19 clinical studies at Ulm University from 2020 to 2022. A thematic analysis was conducted on the protocols of 98 COVID-19 studies, finding that informed consent was obtained through traditional written form, waived, obtained delay, or obtained by proxy.
Article
Remote Sensing
Vyshnave Jeyabalan, Lorie Donelle, Patrick Meier, Elysee Nouvet
Summary: Drones are being introduced in healthcare delivery worldwide, particularly in remote areas with inadequate healthcare services. However, there is limited guidance on engaging communities in decision-making about drone use. This paper focuses on obtaining consent for implementing Drones for Health projects, highlighting ethical and practical challenges.
Article
Clinical Neurology
Ally Peabody Smith, Nader Pouratian, Ashley Feinsinger
Summary: As neurologically implanted devices become more widely used in clinical applications, there are increasing opportunities for intracranial investigations in human patients. In some cases, patients participate in research during their awake brain surgery, without potential therapeutic benefits. Ethical challenges arise in such intraoperative studies, conducted during a clinical intervention, in a clinical setting, and often by the treating clinician. The need for innovative informed consent methods in intraoperative research is a pressing concern, but current practices are insufficient in addressing participant understanding and trust between patient-participants and surgeon-researchers.
Article
Psychiatry
Ilaria Falvo, Maddalena Fiordelli, Rebecca Amati, Aliaa Ibnidris, Emiliano Albanese, Marta Fadda
Summary: The study revealed that participants had inaccurate beliefs about the scope of informed consent, which could potentially harm trust. They identified contradictory needs and misunderstood informed consent procedures in clinical and research settings. Participants should be informed in a focused and age-appropriate manner to dispel confusion about the purpose of research.
FRONTIERS IN PSYCHIATRY
(2021)
Article
Obstetrics & Gynecology
Summary: Informed consent is a process that involves supporting patients to understand medical options and make voluntary and autonomous decisions, considering the risks, benefits, and alternatives.
FERTILITY AND STERILITY
(2023)
Article
Multidisciplinary Sciences
Ingrid Amgarth-Duff, Annmarie Hosie, Gideon A. Caplan, Meera Agar
Summary: This study explored the perspectives of delirium researchers on key methodological issues in delirium biomarker research, revealing practical and scientific challenges as well as the value of delirium research. Collaborative efforts to enhance research quality for improved impact were highlighted as important factors in advancing the field.
Article
Medicine, Research & Experimental
Julia Wade, Elka Humphrys, Alba X. Realpe, Daisy M. Gaunt, Jenni Burt
Summary: The participatory and informed consent (PIC) measure was developed to assess recruiter information provision and patient understanding in recruitment discussions. The measure was evaluated and revised within the context of the OPTiMISE trial, demonstrating good feasibility, content validity, and reliability.
Article
Psychology, Multidisciplinary
Edward Jacobs
Summary: As psychedelic-assisted psychotherapy (PAP) becomes more widely used, there is a need to adapt clinical ethics to accommodate its unique features. The long-term effects of psychedelic drugs and the transformative experiences they induce challenge the traditional understanding required for informed consent. This article explores the ethical implications and consequences for prospective patients.
FRONTIERS IN PSYCHOLOGY
(2023)
Article
Agricultural Economics & Policy
Anna Josephson, Melinda Smale
Summary: Ethical research requires informed consent and voluntary participation of participants, overseen by Institutional Review Boards. However, there are inconsistencies in perspectives and practices across regions. Lack of IRBs and varying principles may fail to adequately protect research participants.
APPLIED ECONOMIC PERSPECTIVES AND POLICY
(2021)
Article
Medicine, Research & Experimental
Despres Caroline, Mamzer Marie-France
Summary: This article explores the factors and logic behind the decision to grant or deny consent for the conservation of tumor samples in a biological resource platform. The findings show that participants readily consented due to their desire to contribute to improving therapeutic medicine, trust in research institutions or doctors, and the unique nature of the samples and lack of constraints. However, they lacked awareness of potential risks and had unclear knowledge of the research's nature and purpose.
JOURNAL OF TRANSLATIONAL MEDICINE
(2023)
Review
Oncology
Joseph A. DeMari, David I. Shalowitz
Summary: This article reviews available data on consent for tumor testing for mismatch repair (MMR) and provides recommendations for ethical best practices. The study suggests that routine consent for tumor testing is not common, but decision aids can improve patient knowledge and satisfaction. Previous ethical analyses on consent practices vary and have deficits in relation to contemporary clinical care.
GYNECOLOGIC ONCOLOGY
(2022)
Article
Social Sciences, Interdisciplinary
Florence Caeymaex, Carole Wenger, Felicien de Heusch, Jean-Michel Lafleur
Summary: Social scientists using ethnographic methods are increasingly facing ethical clearance procedures imposed by various organizations. The article focuses on informed consent procedures in particular and discusses their impact on fieldwork interactions. It shows how these procedures in Europe have been influenced by biomedical science and examines their implementation in an EU-funded project on migration studies. The article argues that while informed consent procedures may reinforce participants' vulnerabilities, they can also activate their power assertion.
INTERNATIONAL JOURNAL OF QUALITATIVE METHODS
(2023)
Article
Ethics
Alicia Diaz-Gil, Joanne Brooke, Olga Kozlowska, Debra Jackson, Jane Appleton, Sarah Pendlebury
Summary: This paper addresses the issue of including people with dementia in research and provides an evidence-based framework for dementia researchers based on the five principles of human rights. The framework aims to guide researchers in designing studies that meet the needs of people with dementia and improve their involvement and participation.
Article
Ethics
Tapani Keranen, Arja Halkoaho, Emmi Itkonen, Anna-Maija Pietila
BMC MEDICAL ETHICS
(2015)
Article
Behavioral Sciences
Emmi Reijula, Arja Halkoaho, Anna-Maija Pietila, Tuomas Selander, Reetta Kalviainen, Tapani Keranen
EPILEPSY & BEHAVIOR
(2015)
Review
Ethics
Arja Halkoaho, Anna-Maija Pietila, Mette Ebbesen, Suyen Karki, Mari Kangasniemi
Article
Ethics
Tove E. Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset, Merja Pirinen, Zandra Engelbak Nielsen
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
(2018)
Article
Ethics
Arja Halkoaho, Mari Matveinen, Ville Leinonen, Kirsi Luoto, Tapani Keranen
BMC MEDICAL ETHICS
(2013)
Article
Management
Sanna-Maria Nurmi, Anna-Maija Pietila, Mari Kangasniemi, Arja Halkoaho
JOURNAL OF NURSING MANAGEMENT
(2015)
Review
Ethics
Sanna-Maria Nurmi, Mari Kangasniemi, Arja Halkoaho, Anna-Maija Pietila
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
(2019)
Article
Ethics
Saara Happo, Tapani Keranen, Arja Halkoaho, Soili M. Lehto
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
(2020)
Article
Endocrinology & Metabolism
Rita Forde, Liga Arente, Davide Ausili, Kristin De Backer, Mette Due-Christensen, Amanda Epps, Anne Fitzpatrick, Moira Grixti, Sijda Groen, Arja Halkoaho, Claudia Huber, Marjolein M. Iversen, Unn-Britt Johansson, Claudia Leippert, Seyda Ozcan, Julie Parker, Ana Christina Paiva, Adina Sanpetreanu, Marie-Alice Savet, Svetic-Cisic Rosana, Alicja Szewczyk, Maite Valverde, Eugenia Vlachou, Angus Forbes
Summary: The survey conducted on 1829 diabetes nurses across Europe revealed that the COVID-19 pandemic has significantly impacted the physical and psychological well-being of people with diabetes. Clinical problems such as anxiety, depression, and foot complications have increased, while the level of care provided and support services have declined during the pandemic.
Review
Ethics
Nina Kilkku, Arja Halkoaho
Summary: Background research on genomics and biobank activities is increasing internationally. In mental health research, concerns about participants' vulnerability and capacity for informed consent can impact recruitment. This study focuses on nurses' perspectives on informed consent practices in genomic research on mental health, highlighting themes such as consent capacity, emotional responses to participation, and factors influencing decisions to participate.
Article
Genetics & Heredity
Mari Laaksonen, Elisa Airikkala, Arja Halkoaho
Summary: Genetics and genomics have become crucial in healthcare, and nursing professionals need to be educated on genomics in order to contribute to precision healthcare. Tampere University of Applied Sciences has successfully integrated genomics into public health nursing studies, highlighting the importance of genomic education for public health nurses.
FRONTIERS IN GENETICS
(2022)
Article
Nursing
Anndra Parviainen, Linda D. Ward, Arja Halkoaho, Bobbi Laing, Jane Maguire, Marjo Palovaara, Petra Mandysova, Gabriel Bacungan, Jima J. Mamungay, Reijo Sund, Santtu Mikkonen, Carsten Carlberg, Katri Vehvila
Summary: This study investigated the genomics literacy of nursing students in Finland and the Philippines, aiming to develop a genomics nursing education course. A cross-sectional online survey was conducted using the Genomic Nursing Concept Inventory, and the results showed weak genomics literacy among the students. The study recommends the development of effective genetic and genomic educational programs and updates to the nursing curricula.
TEACHING AND LEARNING IN NURSING
(2023)
Review
Nursing
Sanna-Maria Nurmi, Arja Halkoaho, Jukka Moilanen, Anne M. Remes, Eino Solje
Summary: This systematic review aims to explore the ethical aspects of genetic testing in neurodegenerative diseases from the perspective of at-risk family members. Through inductive content analysis of 24 selected studies, four central ethical implications were identified, highlighting the need for further research in this area.
SCANDINAVIAN JOURNAL OF CARING SCIENCES
(2021)
Article
Nursing
Hannaleena Karjalainen, Arja Halkoaho, Anna-Maija Pietila, Stepani Bendel, Tapani Keranen
SCANDINAVIAN JOURNAL OF CARING SCIENCES
(2019)
Review
Sociology
Chariklia Tziraki-Segal, Vincenzo De Luca, Silvina Santana, Rosa Romano, Giovanni Tramontano, Paola Scattola, Corrado Celata, Giusi Gelmi, Sara Ponce Marquez, Luz Lopez-Samaniego, Veronica Zavagli, Arja Halkoaho, Corrina Grimes, Maria Teresa Tomas, Beatriz Fernandes, Laura Calza, Patrizia Speranza, Liliana Coppola, Harriet Jager-Wittenaar, Ronan O'Caoimh, Anna-Maija Pietila, Ana Maria Carriazo, Joao Apostolo, Guido Iaccarino, Giuseppe Liotta, Donatella Tramontano, William Molloy, Maria Triassi, Vincenzo Viggiani, Maddalena Illario
FRONTIERS IN SOCIOLOGY
(2019)