The Price of Genetic Knowledge: Implications of DNA and Pharmacogenetic Testing on Insurance Access and Data Use.

From Recognition to Reimbursement: An Assessment of State Medicaid Coverage Policies for Genetic Counselors and a Path Forward

Powerful Perceptions of Genetic Information.

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.

Knowledge and misconceptions of the French population regarding medical genetics: a survey of 3,000 respondents

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.

Medicolegal and ethical concerns in genetic tests communication

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.

Public perceptions of polygenic testing and embryo selection for non-medical traits.

Some advances in reproductive technologies raise substantial ethical and psychological challenges, for example, the use of preimplantation genetic testing to select embryos based on non-medical traits. While studies have explored public willingness to use preimplantation genetic testing for medical or non-medical attributes, stated willingness may not reflect implantation decisions when such information is available. This large cross-national study examined public views on polygenic embryo testing. In a US sample (N = 1,467), participants were more willing to test for medical conditions (for example, heart disease) than non-medical traits (for example, antisocial behaviour or low intelligence), although over half supported testing for non-medical traits. In a forced-choice implantation task, participants used medical and non-medical information to a similar extent when making decisions. Similar patterns were observed in Chinese participants (N = 623). These findings suggest variability in choices across specific traits and conditions, rather than a uniform distinction between medical conditions and non-medical traits. The Stage 1 protocol for this Registered Report was accepted in principle on 7 October 2025. The protocol, as accepted by the journal, can be found at https://osf.io/vb9c2 .

Cost-utility analysis of implementing early genetic screening programs for hereditary cancer (e.g., BRCA mutations) in the compulsory medical insurance system

Hereditary cancers associated with mutations in the BRCA1/BRCA2 genes are characterized by early onset, aggressive disease progression, and a significant economic burden on the healthcare system due to the need for high-tech and expensive treatments at late stages. The aim of this study was to conduct a pharmacoeconomic cost-utility analysis of the implementation of targeted early genetic screening programs in the compulsory health insurance (CHI) system of the Russian Federation. This study utilized mathematical modeling methods (Markov model), a retrospective analysis of clinical and economic data, and the calculation of the incremental cost-effectiveness ratio (ICER) using the quality-adjusted life year (QALY) indicator. Modeling results demonstrated that incorporating genetic testing for individuals with a positive family history into patient routing is an economically feasible strategy: the calculated ICER is below the willingness-to-pay threshold adopted for the Russian healthcare system. It was found that preventing breast and ovarian cancer or detecting it at early, localized stages provides significant long-term savings for the compulsory health insurance system by reducing treatment costs for disseminated forms of the disease and leads to a significant increase in QALYs saved. The need to integrate early genetic testing algorithms into federal clinical guidelines and the compulsory health insurance system is substantiated as a cost-effective secondary prevention tool that helps reduce cancer mortality and optimize healthcare resource allocation.