Article
Ethics
Oksana N. Sulaieva, Oksana Artamonova, Oleksandr Dudin, Rostyslav Semikov, Dmytro Urakov, Yurii Zakharash, Arman Kacharian, Vasyl Strilka, Ivan Mykhalchuk, Oleksii Haidamak, Olena Serdyukova, Nazarii Kobyliak
Summary: Building a biobank network is crucial for genomic research and personalized medicine in developing countries like Ukraine. However, barriers such as lack of legal and ethical governance and community distrust need to be addressed. National guidelines and education for physicians and patient communities are necessary.
JOURNAL OF MEDICAL ETHICS
(2023)
Review
Medicine, General & Internal
T. J. Kasperbauer, Colin Halverson
Summary: Research biobanks enrolling minors face challenges when reconsenting participants at 18, with minimal federal guidance in the U.S. Some argue for waivers given low risks and practicality issues. Ethical debates surround when adolescents can make autonomous decisions, with evidence-based policies needed.
FRONTIERS IN MEDICINE
(2021)
Article
Multidisciplinary Sciences
Ahmed Samir Abdelhafiz, Eman A. Sultan, Hany H. Ziady, Douaa M. Sayed, Walaa A. Khairy
Summary: Although many Egyptian physicians had heard about biobanking, they had limited knowledge about the existence of biobanks in Egypt. They expressed concerns about commercialization, use of broad consent, and user fees. There is a knowledge gap among these stakeholders that should be addressed through various educational activities.
Article
Ethics
Morten Ebbe Juul Nielsen, Nana Cecilie Halmsted Kongsholm
Summary: This paper discusses the ethics of obtaining human genetic samples for biobank research. It argues for a more liberal approach to consent, stating that donors do not need to know all the specifics of future sample uses. The paper defends the concept of blanket consent, supported by considerations of trust-relations and institutional oversight.
JOURNAL OF BIOETHICAL INQUIRY
(2022)
Article
Orthopedics
Satvik N. Pai, Madhan Jeyaraman, Nicola Maffuli, Naveen Jeyaraman, Filippo Migliorini, Ashim Gupta
Summary: To address the lack of uniformity and standard procedure in obtaining informed consent for total knee arthroplasty (TKA), researchers developed a pre-designed, evidence-based informed consent form. After one year of use, it was found to be legally sound and beneficial for both orthopaedic surgeons and patients.
JOURNAL OF ORTHOPAEDIC SURGERY AND RESEARCH
(2023)
Article
Pediatrics
Erwin Jiayuan Khoo, Devan M. Duenas, Benjamin S. Wilfond, Luke Gelinas, Armand H. Matheny H. Antommaria
Summary: This article discusses the ethical concerns surrounding incentives in pediatric research in developing countries, which may unduly influence parents and exploit children. A case study from a low- and middle-income country is presented, focusing on a multinational clinical trial involving children and the ethical considerations involved. Commenters highlight cultural differences in expectations regarding children's role in the consent process, propose using incentives that directly benefit the child participant, and emphasize the need to minimize risks and balance benefits in order to address the concerns raised.
Article
Family Studies
Michele Polfuss, Kim Mooney-Doyle, Mary Keller, Karen S. Gralton, Barbara Giambra, Ashlee Vance
Summary: When individuals participate in health care research, it often affects the entire family. However, there is a lack of resources to educate potential study participants from a family perspective. Therefore, a family-focused, evidence-based resource was created to facilitate discussion and informed decision making.
JOURNAL OF FAMILY NURSING
(2023)
Article
Ethics
Faisal Khatib, Dayana Jibrin, Joud Al-Majali, Mira Elhussieni, Sharifeh Almasaid, Mamoun Ahram
Summary: Students at the University of Jordan show strong enthusiasm and willingness to participate in biomedical research and biobanking, providing hope for future development.
BMC MEDICAL ETHICS
(2021)
Article
Psychiatry
Janos L. Kalman, Gerrit Burkhardt, Kristina Adorjan, Barbara B. Barton, Sylvia De Jonge, Daniela Eser-Valeri, Christine M. Falter-Wagner, Urs Heilbronner, Andrea Jobst, Daniel Keeser, Christian Koenig, Gabi Koller, Nikolaos Koutsouleris, Carolin Kurz, Dominic Landgraf, Katharina Merz, Richard Musil, Afton M. Nelson, Frank Padberg, Sergi Papiol, Oliver Pogarell, Robert Perneczky, Florian Raabe, Matthias A. Reinhard, Almut Richter, Tobias Ruether, Maria Susanne Simon, Andrea Schmitt, Lenka Slapakova, Nanja Scheel, Cornelius Schuele, Elias Wagner, Sven P. Wichert, Peter Zill, Peter Falkai, Thomas G. Schulze, Eva Christina Schulte
Summary: The Munich Mental Health Biobank (MMHB) is a specialized biobank for mental health that aims to collect, store, and provide high-quality data and biosamples from patients and study participants. As of now, MMHB has collected data from 578 patients and 104 healthy controls, who have more mental health-related contacts, milder symptoms, and higher levels of functioning.
FRONTIERS IN PSYCHIATRY
(2022)
Review
Cell Biology
Georges Dagher
Summary: Human biospecimens are crucial for research in understanding human diseases and developing tailored treatments. Biobanks play a key role in collecting, processing, preserving, storing, and providing access to these resources. The standards outlined here aim to ensure high-quality samples and data for researchers, while maintaining ethical and legal compliance and efficient access procedures.
CELL PROLIFERATION
(2022)
Article
Ethics
Olga Tzortzatou-Nanopoulou, Kaya Akyuez, Melanie Goisauf, Lukasz Kozera, Signe Mezinska, Michaela Th Mayrhofer, Santa Slokenberga, Jane Reichel, Talishiea Croxton, Alexandra Ziaka, Marina Makri
Summary: The activity of biobanks not only focuses on the technology of collecting and storing human biospecimens, but also involves the preparation of formal documentation to ensure safe use for scientific research. This paper provides practical solutions regarding informed consent, incidental findings reporting, and the use of Transfer Agreements in collaborative and transnational biobanking research. It presents a four-step checklist to guide researchers in complying with legal and ethical guidelines when designing studies, recruiting participants, handling samples and data, and communicating research results and incidental findings. While the paper emphasizes the EU as a case study, the checklist has global applicability.
DEVELOPING WORLD BIOETHICS
(2023)
Article
Ethics
Fabian J. S. van der Velden, Emma Lim, Lily Gills, Jasmin Broadey, Louise Hayes, Eve Roberts, Jack Courtney, Joanne Ball, Jethro Herberg, Rachel Galassini, Marieke Emonts, DIAMONDS consortium
Summary: This study explores the views and knowledge of children and young people in the UK regarding biobanking and consent. The findings suggest that most children accept prospective and deferred consent, and prefer to reconsent when cognitively mature enough. Additionally, children wanted to be informed about the reuse of their biobanked biospecimens.
BMC MEDICAL ETHICS
(2023)
Article
Medicine, Research & Experimental
Tanya J. Symons, Nicola Straiton, Rosie Gagnon, Roberta Littleford, Anita J. Campbell, Asha C. Bowen, Adam G. Stewart, Steven Y. C. Tong, Joshua S. Davis
Summary: Consumers support a layered approach to consent and emphasize the importance of considering participants' information needs, health literacy, and the balance between the benefits and risks of a trial.
Article
Geriatrics & Gerontology
Michelle Pyer, Alison Ward
Summary: This paper explores the process of gaining consent from the perspectives of people living with dementia, their relatives/carers, and service providers. The study identifies concerns with autonomy, decision making, and placing people living with dementia at the center of the consent process. The journey of consent emerges as central to supporting participation and enhancing the consent process.
AGING & MENTAL HEALTH
(2023)
Article
Engineering, Civil
Linzi Fan, Ruizhi Xu, Pan Shi, Xiaodong Feng, Yao Chen
Summary: This study proposes a simplified form-finding method for tensegrity structures based on reference joints of symmetry orbits and force density theory. The method utilizes the inherent symmetry of structural systems by introducing a series of orthogonal transformation matrices for certain reference joints. The original form-finding problem is simplified into finding null spaces for several small-sized force density matrices about the reference joints. The proposed method can significantly simplify the computational complexity of form-finding for tensegrity systems with symmetry orbits.