Review
Public, Environmental & Occupational Health
Sara Casati, Bridget Ellul, Michaela Th. Mayrhofer, Marialuisa Lavitrano, Elodie Caboux, Zisis Kozlakidis
Summary: Biobanks play a crucial role in pediatric translational research, but the involvement of children in biobanking has received limited attention. This study explores the ethical, legal, and societal issues in pediatric biobanking and proposes a way forward for involving children as partners in research. The findings highlight a shift towards considering the minor's consent as crucial and the need for tools to assess maturity and shared best practices.
FRONTIERS IN PUBLIC HEALTH
(2022)
Article
Chemistry, Multidisciplinary
Alexandra Kapeller, Heike Felzmann, Eduard Fosch-Villaronga, Kostas Nizamis, Ann-Marie Hughes
Summary: This paper provides practical guidance for the implementation of ethical, legal and societal implications in the design, development and use of wearable robots, aiming to help the community develop safer, more user-friendly devices that have a positive impact on society.
APPLIED SCIENCES-BASEL
(2021)
Article
Multidisciplinary Sciences
Jacob S. Sherkow, Katharine B. Barker, Irus Braverman, Robert Cook-Deegan, Richard Durbin, Carla L. Easter, Melissa M. Goldstein, Maui Hudson, W. John Kress, Harris A. Lewin, Debra J. H. Mathews, Catherine McCarthy, Ann M. McCartney, Manuela da Silva, Andrew W. Torrance, Henry T. Greely
Summary: The Earth BioGenome Project (EBP) aims to obtain whole-genome sequences of all eukaryotic species on Earth. This paper, from the EBP's Ethical, Legal, and Social Issues (ELSI) Committee, highlights the legal, ethical, and social concerns faced by the project, including issues related to sample collection, international treaties, intellectual property, and biosecurity. The paper also discusses the ethical implications of sampling from indigenous territories, protecting endangered species, and cross-border collections. The authors conclude by providing a starting point for addressing these issues and considering ethical frameworks for future projects.
PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES OF THE UNITED STATES OF AMERICA
(2022)
Editorial Material
Biochemistry & Molecular Biology
Muhammad Sajeer
Summary: Nanopore sequencing has the potential to become a consumer product due to its affordability and ease of use. However, its widespread adoption would raise new social, legal, and ethical challenges.
Editorial Material
Medicine, General & Internal
Y. Tony Yang, Diana J. Mason
Summary: Pharmaceutical companies utilize nurse ambassadors, paid registered nurses who interact with patients in home or phone visits to facilitate provision, administration, and refills of expensive medication. Despite a 2020 settlement requiring improved disclosures between AbbVie and the state of California, these programs are largely allowed to continue.
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION
(2021)
Letter
Public, Environmental & Occupational Health
Jeff Clyde G. Corpuz
Summary: Vaccination is crucial for public health, but the COVID-19 pandemic has raised debates on legal exemptions and consequences. The pressure is high as vaccination programmes progress. Ethical and legal issues, such as the 'no-jab, no-job' clause, are arising in many countries.
JOURNAL OF PUBLIC HEALTH
(2021)
Article
Ethics
Nertila Podgorica, Emiljano Pjetri, Andreas W. Mueller, Daniela Deufert
Summary: The study investigates nurse's knowledge and experiences regarding ethical and legal issues in Albanian elder care institutions. It highlights the lack of ethical and legal education among nurses and the need for further education in this area. The findings suggest that strengthening patient rights may conflict with traditional rights of the Albanian family, underscoring the importance of preparing nurses for ethical conflicts with families.
Article
Geriatrics & Gerontology
John M. Halphen, Christina F. Solis, Jason Burnett
Summary: Telecommunication-assisted forensic assessments by geriatricians are meeting the demand for services in remote areas of Texas, especially during the COVID-19 pandemic. Collaboration between medical schools' geriatrician faculty and APS agencies could serve as a model for similar programs in other states.
JOURNAL OF THE AMERICAN GERIATRICS SOCIETY
(2021)
Review
Cell & Tissue Engineering
Ana S. Iltis, Grace Koster, Emily Reeves, Kirstin R. W. Matthews
Summary: Recent advances in pluripotent stem cell culture have led to the development of entities, known as embryoids, which closely resemble advanced stages of early embryo development. A systematic review of literature from 2016 to 2022 identified four categories of ethical, legal, regulatory, and policy considerations in human embryoid research: research justifications/benefits, ethical significance or moral status, permissible use, and regulatory and oversight challenges. Analyzing these issues is crucial for advancing ethical and regulatory frameworks in this emerging field.
STEM CELL RESEARCH & THERAPY
(2023)
Article
Pediatrics
Piergiorgio Fedeli, Nunzia Cannovo, Roberto Scendoni, Mariano Cingolani
Summary: Italy implemented early prevention measures against the new coronavirus outbreak, but faced challenges with minors. While young people seem less vulnerable to severe complications of COVID-19 at the moment, the psychological impact of pandemic-related restrictions should be seriously considered.
FRONTIERS IN PEDIATRICS
(2021)
Article
Pharmacology & Pharmacy
C. Bai, B. -H. Liao, R. -P. Lei
Summary: Based on literature review and philosophical reflection, this article points out the deficiencies and problems in current research on brain banks, focusing on the lack of analysis of ELSI issues and the nature of brain banks and human brain samples. The article analyzes the formation process of modern brain banks, the different types of brain banks, and the nature of brain banks and human brain samples using an analogical model. Finally, it reiterates the main ideas of the paper and presents questions for further reflection.
EUROPEAN REVIEW FOR MEDICAL AND PHARMACOLOGICAL SCIENCES
(2022)
Review
Obstetrics & Gynecology
Brenda L. C. Oliveira, Lauren M. Ataman, Jhenifer K. Rodrigues, Telma S. Birchal, Fernando M. Reis
Summary: Access to assisted reproductive technology (ART) and fertility preservation in Brazil faces significant challenges, with limited availability in public hospitals, lack of coverage by health insurance, and high costs for private care. Despite economic projections suggesting affordability and potential profitability for the state, the lack of universal access highlights the social disparities in accessing these services.
REPRODUCTIVE BIOMEDICINE ONLINE
(2021)
Article
Pharmacology & Pharmacy
C. Bai, B. -h. Liao, R. -p. Lei
Summary: This article highlights the deficiencies and problems in current research on brain banks, particularly focusing on the ethical, legal, and social issues during the implementation process. It provides an analysis of the formation process and nature of modern brain banks, as well as the ethical considerations at different stages of brain tissue sample use.
EUROPEAN REVIEW FOR MEDICAL AND PHARMACOLOGICAL SCIENCES
(2022)
Article
Pediatrics
Jennifer E. deSante-Bertkau, Timothy K. Knilans, Govind Persad, Patricia J. Zettler, Holly Fernandez Lynch, Armand H. Matheny Antommaria
Summary: Commentators analyze the clinical, ethical, and legal issues surrounding the off-label prescribing of COVID-19 vaccine to children. Although off-label use is common in pediatrics, the FDA, CDC, and AAP recommend against off-label prescription of the vaccine for children younger than 16 years old. This analysis considers the risks, benefits, and ethical concerns of off-label vaccination in younger age groups.
Review
Biochemistry & Molecular Biology
Daniela Marone, Anna Maria Mastrangelo, Grazia Maria Borrelli
Summary: Biotechnological approaches such as transgenesis and genome editing have become increasingly important for genetic improvement of crops. These approaches have led to the development of traits such as resistance to herbicides and insects, as well as traits related to human population growth and climate change. However, the use of these approaches is limited by legislative restrictions and ongoing public debate. This review provides an updated and in-depth discussion on these issues.
INTERNATIONAL JOURNAL OF MOLECULAR SCIENCES
(2023)
Article
Ethics
Anke Snoek, Sanneke de Haan, Maartje Schermer, Dorothee Horstkotter
Summary: Gilbert et al. argue that concerns about the impact of DBS on PIAAAS are due to an ethics hype, but they fail to prove that the identity debate is just a bubble and provide little evidence to support this view. Their study highlights the challenges of conducting research in interdisciplinary fields, offering valuable lessons for future research agendas.
Article
Oncology
Jeroen J. van den Broek, Clyde B. Schechter, Nicolien T. van Ravesteyn, A. Cecile J. W. Janssens, Michael C. Wolfson, Amy Trentham-Dietz, Jacques Simard, Douglas F. Easton, Jeanne S. Mandelblatt, Peter Kraft, Harry J. de Koning
Summary: Breast cancer family history and polygenic risk score can guide screening decisions for women aged 30-50 years. Combining family history and PRS has greater benefits in terms of life-years gained and breast cancer deaths averted compared to biennial screening from 50 to 74 years old.
JNCI-JOURNAL OF THE NATIONAL CANCER INSTITUTE
(2021)
Article
Neurosciences
Krista Tromp, Marthe Smedinga, Edo Richard, Marieke Perry, Maartje H. N. Schermer
Summary: Most Dutch physicians interviewed in this qualitative study considered early AD diagnosis as early diagnosis of dementia, and most were against pursuing an early AD diagnosis in people with no or mild cognitive impairment. Six clusters of considerations influencing physicians' diagnostic decision-making were identified: preferences and characteristics of persons, test characteristics, impact on care, type of setting, disease concepts, and societal level issues. The discussion of a biomarker-based early diagnosis of AD widely held in the scientific field has not structurally entered clinical practice, as it does not align with Dutch physicians' views on providing good care for individuals with no, subjective, or mild cognitive impairment.
JOURNAL OF ALZHEIMERS DISEASE
(2021)
Article
Genetics & Heredity
Bart Penders, A. Cecile J. W. Janssens
Summary: Polygenic risk scores (PRS) are distinct from other biomarkers as they are calculated, compiled or constructed through the statistical assemblage of genetic variants. How researchers frame and name PRSs impacts how we interpret and value their results. Important questions include what PRS seeks to represent, whether current ways of 'doing PRS' are optimal and responsible, and the basis for the credibility of PRS-based knowledge claims.
Review
Health Care Sciences & Services
Elise Pel, Ingeborg Engelberts, Maartje Schermer
Summary: Patient-centered care is considered essential in breast cancer treatment, but its implementation in clinical practice is challenging. This study aimed to bridge the gap between theoretical concepts and actual clinical practice, exploring the diverse interpretations and applications of patient-centered care in recent literature. It suggests embracing the diversity of the concept and focusing on real-world effects rather than abstract contributions when implementing patient-centered care for breast cancer patients.
JOURNAL OF EVALUATION IN CLINICAL PRACTICE
(2022)
Article
Health Care Sciences & Services
Pei-Hua Huang, Ki-Hun Kim, Maartje Schermer
Summary: This study aims to address the major ethical risks of digital twins for personalized health care services by providing a working definition and a process-oriented ethical map. The results include the features of digital twins, operational problems, and corresponding ethical risks. The proposed ethical map can assist developers in analyzing ethical risks in a more systematic manner.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2022)
Article
Ethics
Rik van der Linden, Maartje Schermer
Summary: Despite ongoing debates on definitions of health and disease concepts, no consensus has been reached. Recent contributions suggest viewing health and disease as practical and plural concepts, rather than seeking a universal definition. Analyzing the practical function in relation to context is crucial for formulating context-specific definitions.
MEDICINE HEALTH CARE AND PHILOSOPHY
(2022)
Article
Ethics
Marthe Smedinga, Eline M. Bunnick, Edo Richard, Maartje H. N. Schermer
Summary: An increasing number of older people seek medical attention for mild cognitive symptoms due to concerns about developing Alzheimer's disease. Some guidelines suggest biomarker testing to improve diagnostic certainty and enable early diagnosis, while critics argue that biomarker tests lack clinical validity. This paper explores the use of reflective equilibrium to weigh the arguments on both sides of the debate, considering factors such as clinical validity, ethical principles, and societal ideals.
JOURNAL OF BIOETHICAL INQUIRY
(2022)
Article
Obstetrics & Gynecology
Sharissa M. Smith, Rianne M. J. J. van der Kleij, Babette Bais, Maartje H. N. Schermer, Hafez Ismaili M'hamdi, Regine P. M. Steegers-Theunissen
Summary: This study aimed to identify the preferences of women with a vulnerable health status towards nudging in order to design an effective app-based nudge. The findings showed that participants found an app to be a useful source of information for the preconception period, and none objected to being rewarded for healthy behavior. They preferred the app to contain information on healthy nutrition and quick pregnancy tips, and having the freedom to choose the timing and content of the rewards increased the probability of successful behavioral change.
BMC PREGNANCY AND CHILDBIRTH
(2022)
Article
Ethics
Ineke L. L. E. Bolt, Maartje H. N. Schermer, Hanna Bomhof-Roordink, Danielle R. M. Timmermans
Summary: Informed decision-making is essential for population-based screening, and governments have a responsibility to provide equal and real opportunities for invitees to make informed decisions. The components of informed decision-making include voluntariness, disclosure, and understanding.
PUBLIC HEALTH ETHICS
(2022)
Article
Ethics
Maartje H. N. Schermer
Summary: Alzheimer's Disease (AD) is used as a case study to examine the changing conceptions of health, disease, pre-disease, and risk. The classification of asymptomatic biomarker positive persons as having preclinical AD or being at risk for AD is explored. The article argues for a departure from dichotomous understanding of disease and highlights the importance of considering the concept of risk and the practical implications of defining concepts.
JOURNAL OF MEDICINE AND PHILOSOPHY
(2023)
Editorial Material
Ethics
Jilles Smids, Maartje Schermer
AMERICAN JOURNAL OF BIOETHICS
(2023)
Article
Health Care Sciences & Services
Sharissa M. Smith, Babette Bais, Hafez Ismaili M'hamdi, Maartje H. N. Schermer, Regine P. M. Steegers-Theunissen
Summary: Women with low socioeconomic status are at a high risk of adverse pregnancy outcomes due to multiple health-deteriorating factors. This study aims to improve the engagement of these women in preconception care using a mobile health app and nudging theory, and assess its feasibility.
JMIR RESEARCH PROTOCOLS
(2023)
Review
Surgery
Dide de Jongh, Emma K. Massey, Antonia J. Cronin, Maartje H. N. Schermer, Eline M. Bunnik
Summary: Regenerative medicine has become a new alternative solution to organ shortage. In early-phase transplantation trials, research participants face serious risks without ethical guidance. A thematic analysis of literature in related fields identified six themes for ethical considerations in early-phase clinical trials.
TRANSPLANT INTERNATIONAL
(2022)
Article
Gerontology
Marthe Smedinga, Eline M. Bunnik, Edo Richard, Maartje H. N. Schermer
Summary: The meaning of Alzheimer's disease (AD) is changing in research, now referring to a pathophysiological process, while in lay literature it is understood as a form of dementia. These different understandings may lead to misunderstandings, especially research framings implying that those with AD biomarkers will inevitably develop dementia. Adoption of the research understanding of AD in clinical practice will have normative implications for priority setting in healthcare.