Article
Multidisciplinary Sciences
Joseph Ochieng, Betty Kwagala, John Barugahare, Erisa Mwaka, Deborah Ekusai-Sebatta, Joseph Ali, Nelson K. Sewankambo
Summary: This study explores researchers' perspectives and experiences regarding feedback of incidental genomics findings to participants in genetics and genomics research. The study finds that researchers generally find it acceptable to share incidental research findings with participants, but face challenges such as lack of ethical guidelines and uncertainty about the findings.
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
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
Multidisciplinary Sciences
Joseph Ochieng, Betty Kwagala, John Barugahare, Marlo Moller, Keymanthri Moodley
Summary: This study assessed the perspectives of grassroots communities in Uganda on the feedback of individual genetics and genomics testing results. The findings showed that individuals in these communities were willing to participate in such research and receive feedback of results, as long as there was a health benefit. However, there were concerns regarding the misconception of therapeutic and/or diagnostic benefits, as well as the perception of using genetics results to confirm paternity. These findings have important implications for research ethics guidance and the process of obtaining informed consent.
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
Ethics
Mark A. Rothstein
Summary: The new NIH data sharing policy, effective January 2023, mandates researchers to include a data management and sharing plan in their grant applications. Enhanced data sharing is encouraged to facilitate secondary research, requiring informed consent documents to outline sharing plans, limitations, and procedures.
JOURNAL OF LAW MEDICINE & ETHICS
(2021)
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
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
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.
Review
Peripheral Vascular Disease
Antonia Vlahou, Dara Hallinan, Rolf Apweiler, Angel Argiles, Joachim Beige, Ariela Benigni, Rainer Bischoff, Peter C. Black, Franziska Boehm, Jocelyn Ceraline, George P. Chrousos, Christian Delles, Pieter Evenepoel, Ivo Fridolin, Griet Glorieux, Alain J. van Gool, Isabel Heidegger, John P. A. Ioannidis, Joachim Jankowski, Vera Jankowski, Carmen Jeronimo, Ashish M. Kamat, Rosalinde Masereeuw, Gert Mayer, Harald Mischak, Alberto Ortiz, Giuseppe Remuzzi, Peter Rossing, Joost P. Schanstra, Bernd J. Schmitz-Draeger, Goce Spasovski, Jan A. Staessen, Dimitrios Stamatialis, Peter Stenvinkel, Christoph Wanner, Stephen B. Williams, Faiez Zannad, Carmine Zoccali, Raymond Vanholder
Summary: This article discusses the impact of GDPR on data and biological sample sharing in biomedical research, highlighting areas for clarification and amendment, as well as emphasizing the importance of public engagement and education.
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
Medicine, General & Internal
Anne Wisgalla, Joerg Hasford
Summary: Inadequate understanding of informed consent is a serious problem in clinical research, with factors such as lengthy and hard-to-read documents, low readability, and therapeutic misconception contributing to the issue. Immediate action is needed to address these deficits.
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
Cardiac & Cardiovascular Systems
Courtenay R. Bruce, Kristin M. Kostick, Estevan D. Delgado, Lidija A. Wilhelms, Robert J. Volk, Martin L. Smith, Sheryl A. McCurdy, Matthias Loebe, Jerry D. Estep, Jennifer S. Blumenthal-Barby
JOURNAL OF CARDIAC FAILURE
(2015)
Article
Cardiac & Cardiovascular Systems
Jennifer S. Blumenthal-Barby, Kristin M. Kostick, Estevan D. Delgado, Robert J. Volk, Holland M. Kaplan, L. A. Wilhelms, Sheryl A. McCurdy, Jerry D. Estep, Matthias Loebe, Courtenay R. Bruce
JOURNAL OF HEART AND LUNG TRANSPLANTATION
(2015)
Article
Public, Environmental & Occupational Health
Michael W. Ross, Joyce Nyoni, Markus Larsson, Jessie Mbwambo, Anette Agardh, John Kashiha, Sheryl A. McCurdy
GLOBAL HEALTH ACTION
(2015)
Article
Immunology
Kim A. G. J. Romijnders, Joyce E. Nyoni, Michael W. Ross, Sheryl A. McCurdy, Jessie Mbwambo, Gerjo Kok, Rik Crutzen
INTERNATIONAL JOURNAL OF STD & AIDS
(2016)
Article
Health Care Sciences & Services
Stephen A. McCurdy, Maria T. Stoecklin-Marois, Daniel J. Tancredi, Tamara E. Hennessy-Burt, Marc B. Schenker
JOURNAL OF RURAL HEALTH
(2015)
Article
Public, Environmental & Occupational Health
Jennifer Freytag, Zhixin J. Jiang, Thomas P. Giordano, Robert A. Westbrook, Sheryl A. McCurdy, Sarah Njue-Marendes, Bich N. Dang
PATIENT EDUCATION AND COUNSELING
(2019)
Article
Education & Educational Research
Jacob Szeszulski, Timothy J. Walker, Sheryl A. McCurdy, Deanna M. Hoelscher
Summary: The study found that most school districts used template language when writing their school wellness policies, with some making edits to the template content. Locally developed school wellness policies tend to include more specific goals and details.
JOURNAL OF SCHOOL HEALTH
(2021)
Article
Health Policy & Services
Rebecca A. Poku, Adobea Yaa Owusu, Patricia Dolan Mullen, Christine Markham, Sheryl A. McCurdy
AIDS CARE-PSYCHOLOGICAL AND SOCIO-MEDICAL ASPECTS OF AIDS/HIV
(2020)
Article
Public, Environmental & Occupational Health
Rebecca A. Poku, Adobea Yaa Owusu, Patricia Dolan Mullen, Christine Markham, Sheryl A. McCurdy
AJAR-AFRICAN JOURNAL OF AIDS RESEARCH
(2017)
Meeting Abstract
Cardiac & Cardiovascular Systems
K. M. Kostick, R. J. Volk, C. R. Bruce, S. A. McCurdy, J. D. Estep, J. S. Blumenthal-Barby
JOURNAL OF HEART AND LUNG TRANSPLANTATION
(2017)
Meeting Abstract
Cardiac & Cardiovascular Systems
K. M. Kostick, R. J. Volk, C. R. Bruce, S. A. McCurdy, J. D. Estep, J. S. Blumenthal-Barby
JOURNAL OF HEART AND LUNG TRANSPLANTATION
(2017)
Article
Health Policy & Services
Rebecca A. Poku, Adobea Yaa Owusu, Patricia Dolan Mullen, Christine Markham, Sheryl A. McCurdy
AIDS CARE-PSYCHOLOGICAL AND SOCIO-MEDICAL ASPECTS OF AIDS/HIV
(2017)
Article
Public, Environmental & Occupational Health
Scherezade K. Mama, Sheryl A. McCurdy, Alexandra E. Evans, Deborah I. Thompson, Pamela M. Diamond, Rebecca E. Lee
HEALTH EDUCATION & BEHAVIOR
(2015)
Article
Health Policy & Services
Alexandra M. Anderson, Michael W. Ross, Joyce E. Nyoni, Sheryl A. McCurdy
AIDS CARE-PSYCHOLOGICAL AND SOCIO-MEDICAL ASPECTS OF AIDS/HIV
(2015)
Article
Public, Environmental & Occupational Health
Scherezade K. Mama, Lorna H. McNeill, Sheryl A. McCurdy, Alexandra E. Evans, Pamela M. Diamond, Heather J. Adamus-Leach, Rebecca E. Lee
AMERICAN JOURNAL OF HEALTH BEHAVIOR
(2015)