What results to disclose, when, and who decides? Healthcare professionals' views on prenatal chromosomal microarray analysis†. (17th February 2016)

• Record Type: Journal Article
• Authors: Shkedi‐Rafid, Shiri; Fenwick, Angela; Dheensa, Sandi; Wellesley, Diana; Lucassen, Anneke M.
• Is Part Of: Prenatal diagnosis. Volume 36:Number 3(2016)
• Page Start: 252
• Page End: 259
• Publication Date: 2016-02-17
• Subjects: Prenatal diagnosis -- Periodicals; Fetus -- Diseases -- Diagnosis -- Periodicals; Electronic journals; 618.32075
• DOI: 10.1002/pd.4772
• Languages: English
• ISSNs: 0197-3851

Abstract

Abstract: Objectives: This study explored the views of healthcare professionals (HCPs) in the UK about what information should be disclosed, when; and whether women/parents should be given a choice as to what they wish to know. Methods: Q‐methodology was used to assess the views of 40 HCPs (genetic HCPs, fetal medicine experts, lab‐scientists). Results: Most participants agreed that variants of unknown clinical significance should not be disclosed. Participants were divided between those who considered variants of uncertain clinical significance helpful for parents and clinicians, and those who considered them harmful. Although recognising the potential disadvantages of disclosing risks for adult‐onset conditions, participants thought it would be difficult to withhold such information once identified. Participants largely supported some parental involvement in determining which results should be returned. Most participants believed that information obtained via CMA testing in pregnancy should either be disclosed during pregnancy, or not at all. Conclusion: HCPs taking part in the study largely believed that variants that will inform the management of the pregnancy, or are relevant to other family members, should be reported. Recent UK guidelines, published after this research was completed, reflect these opinions. © 2016 The Authors. Prenatal Diagnosis published by John Wiley & Sons, Ltd. Abstract : What's already known about this topic? Empirical data on healthcare professionals' (HCPs) and parents' experience with prenatal CMA are scarce. Published data mainly focused on issues around uncertain results obtained via CMA, and on genetic health professionals. The two main difficulties expressed by genetic counsellors associated with testing were interpreting uncertain results, and termination of pregnancies based on uncertain results What does this study add? It is the first study examining attitudes of a wide range of professionals involved in CMA testing: laboratory professionals, fetal medicine experts, and genetic health professionals. We describe what types of results professionals think should or should not be disclosed and with whom they consider the onus for such decision making should lie. These views are reflected in the recent UK guidelines about CMA testing.