Publications

Research participants are often deceived for methodological reasons. However, assessing the ethical acceptability of an individual study that uses deception is not straightforward. The academic literature is scattered on the subject and several aspects of the acceptability assessment are only scarcely addressed, which parallels reports of inconsistent ethics review. Therefore, we aimed to investigate where normative guidance documents agree and ...

Recently, the use of polygenic risk scores in embryo screening (PGT-P) has been introduced on the premise of reducing polygenic disease risk through embryo selection. However, it has been met with extensive critique: considered "technology-driven" rather than "evidence-based", concerns exist about its validity, utility, ethics, and societal effects. Its scientific foundations and criticisms thus need to be carefully considered. However, seeing ...

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 ...

Contact investigation is an evidence-based intervention of multidrug-resistant tuberculosis (MDR-TB) to protect public health by interrupting the chain of transmission. In pursuit of contact investigation, patients' MDR-TB status has to be disclosed to third parties (to the minimum necessary) for tracing the contacts. Nevertheless, disclosure to third parties often unintentionally leads the MDR-TB patients suffered from social discrimination and ...

Genomic sequencing has emerged as a powerful tool with significant implications for patients and their relatives, however, empirical evidence suggests that effective dissemination of risk information within families remains a challenge. Policy responses to address this issue vary across countries, with Belgium notably lacking specific regulations governing nondisclosure of genetic risk. In this study, we conducted semi-structured interviews with ...

RESEARCH QUESTION: What are the perspectives of preimplantation genetic testing (PGT) patients in Belgium on the ethics of PGT for polygenic risk scoring (PGT-P)? DESIGN: In-depth interviews (18 in total, 10 couples, 8 women, n = 28) were performed with patients who had undergone treatment with PGT for monogenic/single-gene defects (PGT-M) or chromosomal structural rearrangements (PGT-SR) between 2017 and 2019 in Belgium. Participants were asked ...

The history of human-subject experimentation has shown the need for safeguards to protect participants from abuse. Balancing participant protection with adequate representation of the adult intellectual disability population in research presents an important challenge. Our study aimed to analyze guidance on the appropriate inclusion of adults with intellectual disability who are or are not able to consent to biomedical research participation. ...

Forensic DNA kinship investigation involves analyzing genetic relationships between individuals to offer new leads for solving (cold) cases. Familial DNA matching has become a valuable asset in criminal case investigations, especially when traditional DNA methods hit dead ends. However, concerns surrounding ethical and privacy implications raised questions about its implementation and acceptance among the general public. The present study ...

STUDY QUESTION: Would the different regulatory approaches for preimplantation genetic testing (PGT) in Europe permit the implementation of preimplantation genetic testing using polygenic risk scores (PGT-P)? SUMMARY ANSWER: While the regulatory approaches for PGT differ between countries, the space provided for potential implementation of PGT-P seems limited in all three regulatory models. WHAT IS KNOWN ALREADY: PGT is a reproductive genetic ...