Equity and timeliness as factors in the effectiveness of an ethical prenatal sequencing service: reflections from parents and professionals

• Published in: European journal of human genetics : EJHG 2024-10
• Main Authors: Peter, Michelle, Hill, Melissa, Fisher, Jane, Daniel, Morgan, McInnes-Dean, Hannah, Mellis, Rhiannon, Walton, Holly, Lafarge, Caroline, Leeson-Beevers, Kerry, Peet, Sophie, Tapon, Dagmar, Wynn, Sarah L, Chitty, Lyn S, Parker, Michael
• Format: Article
• Language: English
• ISSN: 1018-4813; 1476-5438; 1476-5438
• DOI: 10.1038/s41431-024-01700-0

Prenatal sequencing tests are being introduced into clinical practice in many developed countries. In part due to its greater ability to detect genetic variation, offering prenatal sequencing can present ethical challenges. Here we review ethical issues arising following the implementation of prenatal sequencing in the English National Health Service (NHS). We analysed semi structured interviews conducted with 48 parents offered prenatal sequencing and 63 health professionals involved in delivering the service to identify the ethical issues raised. Two main themes were identified: (1) Equity of access (including issues around eligibility criteria, laboratory analytical processes, awareness and education of clinicians, fear of litigation, geography, parental travel costs, and access to private healthcare), and (2) Timeliness and its impact on parental decision-making in pregnancy (in the context of the law around termination of pregnancy, decision-making in the absence of prenatal sequencing results, and the "importance" of prenatal sequencing results). Recognising both the practical and systemic ethical issues that arise out of delivering a national prenatal sequencing service is crucial. Although specific to the English context, many of the issues we identified are applicable to prenatal sequencing services more broadly. Education of health professionals and parents will help to mitigate some of these ethical issues.