The purpose of this paper is to provide an overview of the state of the art on the communication of genetic test results in both clinical and judicial practice in Europe, with a specific focus on Italy.
Abstract
Objective Genetic information is a special category of personal data that is relevant for its predictive reach. The purpose of this paper is to provide an overview of the state of the art on the communication of genetic test results in both clinical and judicial practice in Europe. Methods Starting from the research problem, legislation, policy documents and case law have been examined in order to combine legal, ethical, judicial and clinical aspects that shape the field of genetic test communication in Europe, with a specific focus on Italy. Results Data suggesting the state-of the art of genetic results communication in clinical practice has been analysed and organized in thematic sections. Conclusion A focus on consent and confidentiality is indicated by the numerous works that have emerged from the human genome project and the general ideas around predictive medicine. The real challenge consists in transforming the potential of genetic data from a personal, ultrapersonal dimension to a solidaristic one, which lies beyond the horizon of personalized and predictive medicine and uncovers a new dimension of universality. Therefore, health professionals’ éxpertise in genetic test communication plays a key role in modern potentials of the information retained within tests.
AbstractResearchers who focus on the ethical, legal, and social implications (ELSI) of genetics have tried to anticipate and mitigate the unique risks of genetic testing. To that end, ELSI scholars have focused on the unique predictive power and the subtle ambiguities of genetic test results. Much of this work has assumed that genomic results accurately predict future health problems and has considered the implications of these accurate predictions for the benefits and harms that may result from access to such test results. In this article, we consider a different type of risk-a type of exceptionalism we term "genetic bias." Genetic bias occurs when genomic results have uncertain implications but are perceived as more accurate and accurately predictive than is warranted. Such bias can lead to inappropriate clinical decisions. Specifically, if the genomic results are thought to be more definitive than they really are, they may lead to undue limitations in care. We explore genetic bias through the lens of neonatology, where burgeoning use of genetic testing routinely impacts everyday medical decision-making. Our concerns are supported by preliminary evidence that both neonatologists and parents harbor genetic biases. We examine the implications of this bias and suggest ways that the detrimental effect of such biases could be mitigated.
K. P. Callahan, Rebecca Mueller, M. Hess et al.· Journal of Clinical Ethics· 0 citations
Critical gaps in public knowledge in genetics are highlighted, emphasizing the need for improved genetic education, including incorporating genetics into school curricula and launching targeted awareness campaigns to promote informed decision-making.
S. Mercier, F. Petit, M. Misrahi et al.· medRxiv· 0 citations
Applying a bioethics framework of autonomy, beneficence, nonmaleficence, nonmaleficence, and justice allows these issues to be examined, and current protections to be evaluated for the purpose of instituting change.
Ava Borgess· Journal of healthcare manage...· 0 citations
Introduction. Each wave of medical progress has brought not only new treatments but also new moral dilemmas. The present convergence of artificial intelligence (AI), digital platforms, and molecular biology represents perhaps the most radical shift yet –one that raises urgent questions about where the boundary lies between technological utility and human rights.Aim. To analyse the impact of technological transformations on the observance of the principles of autonomy, human dignity, integrity, and justice in modern clinical medicine, and to justify the necessity of a human-centred model for the responsible implementation of medical innovations.Materials and methods. Narrative review. Search conducted in Scopus, PubMed, and Web of Science (2014-2024), with inclusion of key international normative documents. Methods: systemic analysis, bioethical analysis, deconstructive analysis, and comparative legal analysis.Results. Algorithmic paternalism and AI opacity formalise informed consent and undermine patient autonomy. Datafication of the person—reducing patients to measurable parameters – threatens human dignity, especially when medical data becomes a commercial resource. Germline genetic editing and neurotechnologies challenge the principle of integrity at the level of personal identity and intergenerational justice. The digital divide and algorithmic bias systematically reproduce social inequalities in new technical forms.Conclusions. Ethics by design – integrating bioethical principles throughout the technology lifecycle – together with algorithmic transparency, human-in-the-loop governance, and international regulatory frameworks, constitutes the necessary condition for preserving the humanistic character of clinical medicine in the era of technological transformation.
Kateryna O. Hololobova, V.–S.M. Halich, R. Palyvoda et al.· Clinical and Preventive Medi...· 0 citations
While genetic engineering (GE) presents transformative potential for medicine, global public perception varies significantly, influenced by cultural, ethical, and educational factors. Extensive research exists in Western contexts, but there is a critical paucity of empirical data on attitudes within African populations, particularly regarding the distinction between therapeutic and non-therapeutic applications. This study investigates the determinants of GE approval among Nigerian youth using a multivariate analytical framework. Data from a sample of Nigerian youths (N=1,517) were analyzed through binary logistic regression to model the likelihood of approval. The model assessed the influence of formal education, domain-specific perceptions (risk reduction, disease prevention, human enhancement), and overarching ethical considerations. The analysis revealed a strong gradient of approval, with highest support for therapeutic applications (e.g., treating fatal diseases: 92.52%) and significantly lower support for enhancement-based uses (e.g., intelligence improvement: 71.31%). Tertiary education was a powerful positive predictor of approval (OR = 3.897, p = 0.003). In the full multivariate model, perceptions of risk reduction for fatal diseases (OR = 3.745, p < 0.001) and approval for preventing non-fatal diseases (OR = 3.836, p < 0.001) were the strongest attitudinal drivers. Conversely, fundamental ethical concerns significantly diminished the likelihood of approval (OR = -1.342, p = 0.037). The full model demonstrated a significantly improved fit over a baseline education-only model (Pseudo R² = 0.3720). Nigerian youth are generally supportive of therapeutic GE but cautious about enhancement applications. Acceptance is driven by a combination of educational attainment, perceived medical utility, and the resolution of core ethical objections. These findings underscore the need for nuanced, context-specific public engagement and science communication strategies in Nigeria that address ethical concerns while highlighting therapeutic benefits to foster informed societal consensus.
Samson Adewale Dada, Sam – Oshagbemi, Oluwayomi Petra, Fogbonjaiye Seun Samuel et al.· International journal of res...· 0 citations
Advances in forensic genetic technology have made genetic data an important tool in modern law enforcement, particularly for identifying perpetrators and solving cold cases. In Indonesia, the use of genetic data has a normative basis in Indonesian National Police Chief Regulation No. 1 of 2024 on the National Criminal Information Center (Piknas), which classifies DNA data as part of criminal perpetrator profiles. However, the regulation remains general and administrative, providing limited provisions on DNA collection, use, privacy protection, and data destruction. This study analyzes the regulation of genetic data use in Indonesia by comparing it with the United States Department of Justice Interim Policy on Forensic Genetic Genealogical DNA Analysis and Searching (2019). Using a normative juridical method with statutory and comparative approaches, the study finds that the DOJ policy provides more comprehensive safeguards, including case requirements, privacy protections, informed consent, restrictions on arrests based solely on genetic associations, and data destruction mechanisms. The study also examines the Draft Law on One Data Indonesia (RUU SDI), which provides general principles of data interoperability and security but does not specifically regulate forensic genetic data. Relevant provisions in Law No. 17 of 2023 on Health, Government Regulation No. 28 of 2024, Law No. 27 of 2022 on Personal Data Protection, Law No. 1 of 2023 on the Criminal Code, Law No. 20 of 2025, and Law No. 1 of 2026 on Criminal Procedure are also considered. The study concludes that Indonesia needs a comprehensive regulatory framework for forensic genetics that incorporates safeguards inspired by the DOJ model while remaining consistent with the national data governance framework under the RUU SDI.
Stefanus Satrio Hadi Wibowo, Stephanie Irene, Julianty Arisandi Nasution et al.· Lentera Negeri· 0 citations
