Guidance for clinical practice from the Joint Committee on Genomics in Medicine on the ethical issues that can arise in prenatal genetic testing.
The use of genetic and genomic tests to support reproductive choices during pregnancy and to guide potential treatment and management is increasingly a part of routine prenatal care. Over the past two decades massive improvements in technologies to ‘read’ the genetic code, and improvements in speed and affordability, mean that prenatal genetic testing is now offered and requested more frequently.
This document considers the ethical issues that can arise in prenatal genetic testing. It focuses on key steps of the prenatal testing pathway: the availability, request, offer and delivery of testing, the interpretation and communication of results and subsequent clinical management. By incorporating relevant legal principles, existing professional guidelines and practical sources of support, it aims to facilitate the decision-making processes for both professionals and patients.
This guidance includes 14 illustrative examples of patients experiencing different ethical issues around testing during pregnancy. The various scenarios have been included to illustrate common dilemmas and help guide clinical practice. The focus in this report is on testing during pregnancy, although reference is made to testing in other contexts to support reproductive choices, for example, pre-implantation genetic testing for monogenic disorders. The guidelines will be relevant to health professionals from a range of clinical specialties, including general practice.
Ethical issues in prenatal genetic diagnosis is the first report on this subject by the Joint Committee on Genomics in Medicine (comprising the Royal College of Physicians, Royal College of Pathologists and British Society for Genetic Medicine (including representatives from the Royal College of Obstetrics and Gynaecology and the Royal College of Paediatrics and Child Health)). It builds on related guidance Consent and confidentiality in genomic medicine published in 2019 by the Joint Committee on Genomics in Medicine.