Review
Genetics & Heredity
Mengyu Lim, Alessandro Carollo, Dagmara Dimitriou, Gianluca Esposito
Summary: This study used document co-citation analysis to systematically review literature on ASD genetic research from 2018 to 2022 and identified 12 major clusters representing different sub-topics in the field.
Review
Psychology, Developmental
Elizabeth Pellicano, Jacquiline den Houting
Summary: This review focuses on the challenges that the conventional medical paradigm of child psychiatry faces, emphasizing on deficits, individual rather than broader context, and a narrow perspective. It also explores how elements of the neurodiversity paradigm can potentially overcome the limitations of the medical model in autism research.
JOURNAL OF CHILD PSYCHOLOGY AND PSYCHIATRY
(2022)
Article
Biochemistry & Molecular Biology
Wan Nur Amalina Zakaria, Sook-Yee Yoon, Adi Wijaya, Asma Hayati Ahmad, Rahimah Zakaria, Zahiruddin Othman
Summary: This article discusses the recent trends and themes in genetic counseling. A total of 3505 documents published from 1952 to 2021 were analyzed, showing an increasing trend in publication rate. The most common types of documents are original articles (71.8%) and review articles (9.7%). The Journal of Genetic Counseling has the highest number of genetic counseling articles (16.7%), followed by Clinical Genetics (2.9%) and the South American Journal of Medical Genetics (2.7%). Five main research themes were identified, including genetic testing, cancer, genetic counselor, prenatal diagnosis, and psychiatry. The genetic counselor theme contains recent keywords such as covid-19, underrepresented population, service delivery models, workforce, disparities, service delivery, professional development, cultural competence, access, diversity, telemedicine, and health literacy. These keywords can guide future research and practice in the field of genetic counseling.
EUROPEAN JOURNAL OF HUMAN GENETICS
(2023)
Review
Health Care Sciences & Services
Joshua P. Tanner, Courtney Takats, Hannah Stuart Lathan, Amy Kwan, Rachel Wormer, Diana Romero, Heidi E. Jones
Summary: This study aims to describe approaches to research ethics for public health research implemented using YouTube data. Through a systematic review, it was found that concrete guidelines on research ethics for social media research, especially around anonymizing and seeking consent when using identifying information, are needed.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2023)
Article
Psychology, Developmental
Gert-Jan Vanaken, Ilse Noens, Herbert Roeyers, Lotte van Esch, Petra Warreyn, Jean Steyaert, Kristien Hens
Summary: Little ethical guidance exists for researchers in behavioral sciences on returning individual research findings to children, especially compared to genetic research. Anecdotal evidence suggests that parents are interested in their child's findings, leading researchers to offer this information as a form of compensation. This practice can have potential harmful consequences for children, highlighting the need for revised ethical recommendations and clear policies for returning research findings.
EUROPEAN CHILD & ADOLESCENT PSYCHIATRY
(2021)
Article
Psychology, Developmental
Arianna Manzini, Emily J. H. Jones, Tony Charman, Mayada Elsabbagh, Mark H. Johnson, Ilina Singh
Summary: This paper outlines the current research on early markers for autism and highlights the ethical concerns surrounding the understanding of children's neurodevelopment. It emphasizes the importance of collaboration between researchers, autistic individuals, and their families to address early interventions that accommodate diverse experiences and preferences.
JOURNAL OF CHILD PSYCHOLOGY AND PSYCHIATRY
(2021)
Review
Medicine, General & Internal
Lawrence Kasherman, Ainhoa Madariaga, Qin Liu, Luisa Bonilla, Michelle McMullen, Shiru (Lucy) Liu, Lisa Wang, Rouhi Fazelzad, Katherine Karakasis, Ann M. Heesters, Amit M. Oza
Summary: This study aims to investigate the rates of references surrounding the ethical oversight of research in COVID-19 related publications, finding that the majority of articles mentioned ethical considerations. However, there were differences in the description of consent processes, with some studies not mentioning consent at all. Variations in research ethics review requirements call for further exploration and standardization.
Review
Infectious Diseases
Nelson K. Sewankambo, Paul Kutyabami
Summary: Recent studies on mass drug administration (MDA) of antibiotics have raised global attention on the unique ethical challenges posed by such interventions. However, there is no specific guidance for Research Ethics Committees (RECs) or Institutional Review Boards (IRBs) in reviewing MDA trials. This study aims to identify the ethical challenges and strengthen the competencies of RECs or IRBs in low- and middle-income countries (LMICs) in their ethical review of these trials.
INFECTIOUS DISEASES OF POVERTY
(2022)
Article
Reproductive Biology
Qi Zhou
Summary: Reproductive biology research is closely related to human health and social progress. Modern reproductive biology research in China has made significant advances and has raised new social and ethical issues.
BIOLOGY OF REPRODUCTION
(2022)
Article
Psychiatry
Kristien Hens, Leni Van Goidsenhoven
Summary: The dominant discourse surrounding neurodevelopmental conditions focuses on biological explanations, but this simplistic approach neglects the experiences and stories of autistic individuals and hinders research and clinical practice. The concept of developmental diversity offers a more meaningful alternative perspective, emphasizing the interaction between individuals and their environment. Adopting a developmental diversity approach can lead to a more inclusive society and transform the way we conduct research.
FRONTIERS IN PSYCHIATRY
(2023)
Review
Biochemistry & Molecular Biology
Katarina Jansakova, Klaudia Kyselicova, Daniela Ostatnikova, Gabriela Repiska
Summary: Saliva, as a potential alternative to other body fluids, offers a complex view on the current state of the individual with its sources of nucleic acid of both human and microbial origin, protein, and non-protein molecules. Using salivary markers may simplify ASD screening and potentially reveal the etiopathogenesis of ASD, with the advantage of easier recruitment of neurotypical counterparts for studies.
INTERNATIONAL JOURNAL OF MOLECULAR SCIENCES
(2021)
Review
Business
Syed Masroor Hassan, Zillur Rahman, Justin Paul
Summary: This literature review provides a comprehensive and detailed examination of consumer ethics research from 2010 to 2020, setting a future research agenda. Current studies primarily rely on single theoretical lenses such as marketing ethics, planned behavior, and neutralization theory, but there is a need to focus on boundary conditions impacting consumer ethics.
PSYCHOLOGY & MARKETING
(2022)
Article
Public, Environmental & Occupational Health
Brian L. Mishara, David N. Weisstub
Summary: Genetic research suggests a heritable component to suicide risk, but predicting individual behavior remains challenging. The potential use of genetic information to predict suicide raises practical and ethical issues, such as the lack of effective preventive interventions and increased psychosocial risks associated with unreliable positive results.
PREVENTIVE MEDICINE
(2021)
Review
Genetics & Heredity
Whiwon Lee, Salma Shickh, Daniel Assamad, Stephanie Luca, Marc Clausen, Cherith Somerville, Abby Tafler, Angela Shaw, Robin Hayeems, Yvonne Bombard
Summary: This study systematically reviewed the literature to examine the impact of digital genetics tools on patient care and system efficiencies. The results showed that digital tools had positive outcomes in various patient outcomes and improved workflow for providers. However, there were some limitations identified, such as the misalignment between study purpose and patient-reported outcomes and the lack of comprehensive tools for the entire genetic counselling and testing trajectory.
JOURNAL OF MEDICAL GENETICS
(2023)
Article
Rehabilitation
M. Ariel Cascio, Jonathan A. Weiss, Eric Racine
Summary: This article discusses the importance of empowerment in research within autism communities, emphasizing the need for individuals with autism to have a say in research decisions. It explores the idea that research ethics can serve as a tool for empowering research participants to shape the research process and context. The article aligns with advocacy communities' goals of inclusion for autistic and disabled individuals.
DISABILITY & SOCIETY
(2021)
Article
Medical Ethics
Shila Abdi, Benoit Nemery, Kris Dierickx
Summary: This study conducted a content analysis of misconduct reports from Denmark, the Netherlands, and Belgium to investigate how (alleged) cases of research misconduct are handled. The findings suggest that investigating committees assess the objective evidence, subjective intent, and case-specific circumstances when considering a case of misconduct. It was also revealed that the percentage of established misconduct varied across the countries.
ACCOUNTABILITY IN RESEARCH-ETHICS INTEGRITY AND POLICY
(2023)
Article
Genetics & Heredity
Harold Matthews, Michiel Vanneste, Kaitlin Katsura, David Aponte, Michael Patton, Peter Hammond, Gareth Baynam, Richard Spritz, Ophir D. Klein, Benedikt Hallgrimsson, Hilde Peeters, Peter Claes
Summary: This study proposed exploratory strategies for assessing facial phenotypic variation within and among clinical and molecular disease entities, and applied these techniques to samples of four RASopathies, providing insights into the direction and severity of facial effects in different syndromes.
JOURNAL OF MEDICAL GENETICS
(2023)
Article
Psychology, Developmental
Hanna Bertilsdotter Rosqvist, Monique Botha, Kristien Hens, Sarinah O'Donoghue, Amy Pearson, Anna Stenning
Summary: This article discusses the status and challenges of neurodivergent individuals in the field of research, and explores how to create an inclusive and collaborative academic environment where different neurotypes can work together. By drawing on research methods from other fields and personal experiences, this article provides insights into how to work with people who are different from us in a more respectful and kind manner.
Article
Education & Educational Research
Roshni Jegan, Kris Dierickx
Summary: This study aims to identify and examine existing national or international guidelines on the inclusion of ethics in basic medical education. By doing so, it hopes to explore and highlight the similarities and differences in their pedagogical goals and prescribed content, thereby contributing to a more holistic understanding of medical ethics education.
ADVANCES IN HEALTH SCIENCES EDUCATION
(2023)
Review
Ethics
Jacopo Ambrosj, Kris Dierickx, Hugh Desmond
Summary: Even if the value-free ideal of science is unattainable, it can still be a beneficial concept for the research community and society. Scholars and institutions concerned with research integrity need to consider the societal and professional consequences of endorsing the value-free ideal. Despite the lack of collaboration between scholars studying research integrity and those working on values in science, there is potential for collaboration to understand research and its ethics.
SCIENCE AND ENGINEERING ETHICS
(2023)
Article
Biochemistry & Molecular Biology
Eva Van Steijvoort, Hilde Peeters, Hilde Vandecruys, Jasper Verguts, Karen Peeraer, Gert Matthijs, Pascal Borry
Summary: The aim of this study was to assess the satisfaction, anxiety, knowledge retention, psychosocial and counseling-related aspects among couples who chose reproductive genetic carrier screening (RGCS). The findings showed that all participants felt they had enough information to make an informed choice and none of them regretted their decision to have RGCS. The study demonstrated that the information/counseling and reporting strategy used in this context led to high participant satisfaction, increased knowledge, and positive psychosocial and counseling-related outcomes.
EUROPEAN JOURNAL OF HUMAN GENETICS
(2023)
Review
Ethics
Daniel Pizzolato, Kris Dierickx
Summary: Promoting research integrity practices among doctoral candidates and early career researchers is crucial for a stable and healthy research environment. A scoping review was conducted to understand the role of mentors in fostering research integrity practices and the responsibilities of mentors and institutions in supporting good mentorship. The review emphasized the importance of mentors instilling responsible research practices, the negative impact of poor mentorship, and the significance of institutional support in promoting good mentorship.
SCIENCE AND ENGINEERING ETHICS
(2023)
Editorial Material
Ethics
Daniel P. Jones, Kristien Hens
Article
Ethics
Krishma Labib, Natalie Evans, Daniel Pizzolato, Noemie Aubert Bonn, Guy Widdershoven, Lex Bouter, Teodora Konach, Miranda Langendam, Kris Dierickx, Joeri Tijdink
Summary: In order to promote research integrity, research institutions have developed guidelines for research integrity education. These guidelines focus on different target groups and recommend mandatory training, follow-up refresher training, informal discussions, rewards and incentives, and evaluation of educational events. The guidelines provide practical guidance for institutions to develop a successful research integrity education strategy and are available as publicly accessible tools.
SCIENCE AND ENGINEERING ETHICS
(2023)
Meeting Abstract
Obstetrics & Gynecology
M. Vialle, M. Lopez-Toribio, J. M. Carrasco, J. Melovska, V. Dimitrievska, K. Hens, J. Struyf, F. Guell, V. Rozee
HUMAN REPRODUCTION
(2023)
Meeting Abstract
Obstetrics & Gynecology
V. Dimitrievska, J. Meloska, M. Vialle, V. G. Rozee, K. Hens, J. Struyf, J. JoseMiguel Carrasco, F. FranciscoJuan Guell
HUMAN REPRODUCTION
(2023)
Meeting Abstract
Biochemistry & Molecular Biology
Maria del Rocio Perez Baca, Eva Z. Jacobs, Lies Vantomme, Pontus LeBlanc, Elke Bogaert, Annelies Dheedene, Laurenz De Cock, Bart Dermaut, Aidin Foroutan, Jennifer Kerkhof, Haley McConkey, Bekim Sadikovic, Bjorn Menten, Bo Yuan, Sarah Vergult, Bert Callewaert
EUROPEAN JOURNAL OF HUMAN GENETICS
(2023)
Article
History & Philosophy Of Science
Jacopo Ambrosj, Hugh Desmond, Kris Dierickx
Summary: Research found that many research integrity documents both allow researchers to be influenced by non-epistemic values and include positions similar to the value-free ideal of science. This results in internal tensions and underdetermined guidance on non-epistemic values, potentially limiting the usefulness of research integrity codes.
Article
Psychology, Developmental
Hanna Bertilsdotter Rosqvist, Monique Botha, Kristien Hens, Sarinah O'Donoghue, Amy Pearson, Anna Stenning
Summary: The aim of this article is to support the development of new autistic-led theories in autism research by importing theories from outside the field and applying them to explore different aspects of autism studies. The authors suggest the use of critical realism, standpoint theory, and neurocosmopolitics including epistemic (in)justice to create more ethical and just autism research. They argue for a shift towards neurodiverse collaboration and the recognition of autistic people's knowledge and experiences. This study will benefit autistic people by promoting their inclusion and creating research that is more closely aligned with their perspectives.
AUTISM IN ADULTHOOD
(2023)
Article
Dentistry, Oral Surgery & Medicine
Katrien Brijs, Hilde Peeters, Constantinus Politis
Summary: This study reviewed the experience of orthognathic surgery in patients with systemic diseases, syndromic conditions, or a history of oncological disease. The findings suggest that complications during and after surgery are uncommon in patients with an underlying disorder, and contraindications for surgery due to medical conditions are very rare.
ORAL AND MAXILLOFACIAL SURGERY-HEIDELBERG
(2023)