Publicaties

Discussions on restricting participation in sports on public health and individual well-being grounds are not new to thesporting context. Over the past decade, such restrictions have ranged from containing infectious diseases to excludingathletes with noncommunicable diseases. This article addresses the question of whether and to what extent it is ethicallyand legally defensible for sport bodies and governments to impose such limitations through ...

Deceiving participants is an ethically complicated research practice which remains an important challenge for research ethics committees (RECs) and researchers, despite the availability of abundant research ethics guidance. Exploring this persistent policy-practice divide, we develop a framework for assessing the needs of the REC review of deceptive studies in a context-sensitive way. Different guidance formats are evaluated in light of their ...

Ethical safeguards such as debriefing are often recommended or required for research studies in which participants are deceived. However, existing guidance on these safeguards seems insufficiently coherent and precise, which may be associated with their suboptimal implementation in practice. This study aimed to contribute to a more coherent and precise framework of ethical safeguards in deceptive studies through semi-structured interviews with a ...

Understanding the regional differences in approved gene therapies, clinical trial development, and regulatory frameworks is crucial for ensuring equitable access and addressing justice issues in advanced therapeutics. This review aimed to evaluate the differences between the US, the EU, Japan, and China and offer policy recommendations to promote harmonization between these countries and regions. Gene therapy approvals show significant regional ...

Recent advances in human genomics have transformed the field, leading to increased integration of genomics into mainstream clinical care, broadening the potential of personalized medicine, and expanding data generation and sharing. From the outset, genetics and genomics have given rise to a broad array of ethical concerns, including issues related to discrimination and stigmatization, informed consent, and reporting requirements of secondary ...

Consumer mental health apps (MHAs) collect and generate mental health-related data on their users, which can be leveraged for research and product improvement studies. Such studies are associated with ethical issues that may be difficult for researchers and app developers to assess. To improve ethical study conduct, governance through rules, agreements and customs could be relied upon, but their translation into practice is subject to barriers. ...

Reproductive genetic carrier screening (RGCS) has emerged as a promising tool for identifying couples with an increased likelihood of conceiving a child with an autosomal recessive or X-linked genetic condition. By enabling early detection, RGCS has the potential to support informed reproductive decision-making. Historically, carrier screening initiatives aimed to decrease the prevalence of specific genetic disorders by targeting particular ...

Genome-wide non-invasive prenatal cell-free DNA screening (NIPT) can lead to the early detection of important health-related information for the fetus and pregnant woman. However, the expanding scope of screening heightens information complexity and creates challenges for clinical interactions. This study explored Belgian healthcare professionals' experiences to identify challenges and solutions to expanded NIPT in practice. We assessed ...

BACKGROUND: The history of research involving human subjects has demonstrated the importance of offering everyone an equal opportunity to participate in research, while safeguarding those who require special attention. When it comes to vulnerable individuals, this consideration is relevant. However, disagreement still exists about the meaning of vulnerability, the identification and definition of vulnerable populations, and how these concepts ...

Research ethics guidance on deception does not seem to provide extensive support to researchers and ethics reviewers on how to assess the justifiability of specific deceptive studies. One potential explanation for this shortcoming is that guidance does not offer precise and coherent descriptions of the ethically relevant characteristics of deceptive studies. To facilitate the development of improved guidance, we report on the findings of ...