Jenny Cunningham1, Lesley Goldsmith2, Heather Skirton3. 1. University of Plymouth, School of Nursing and Midwifery, Faculty of Health, Education and Society, Drakes Circus, Plymouth PL4 8AA, United Kingdom. Electronic address: jennymidwife@googlemail.com. 2. University of Plymouth, School of Nursing and Midwifery, Faculty of Health, Education and Society, Drakes Circus, Plymouth PL4 8AA, United Kingdom. Electronic address: lesley.goldsmith@plymouth.ac.uk. 3. University of Plymouth, School of Nursing and Midwifery, Faculty of Health, Education and Society, Drakes Circus, Plymouth PL4 8AA, United Kingdom. Electronic address: heather.skirton@plymouth.ac.uk.
Abstract
BAACKGROUND: Preimplantation genetic diagnosis was developed as an alternative to prenatal diagnosis for couples with a family history of genetic disease. After in vitro fertilization, the embryos can be analysed to ensure that only healthy embryos are transferred to the uterus. Past studies have suggested that couples who wish to avoid having a child with an inherited genetic condition look favourably on preimplantation genetic diagnosis as it prevents the need for termination of pregnancy following prenatal diagnosis of an affected fetus. However, it is important to understand the experiences of couples who have used or consider using this technique. METHODS: To ascertain the current evidence base on this topic, we conducted a mixed methods systematic review. Four databases were searched for relevant peer-reviewed papers published between 2000 and 2013. Of 453 papers, nine satisfied the inclusion criteria and were assessed for quality. Results of nine papers were analysed and synthesised using a narrative approach. FINDINGS: Three main themes emerged: (1) motivating factors; (2) emotional labour; (3) choices and uncertainty. The review has identified an emotional and difficult journey for couples pursuing preimplantation genetic diagnosis. While use of the technique gives hope to families who wish to prevent transmission of a genetic disease this is not without hard decision-making and periods of uncertainty. Lack of information was perceived as a barrier to access this reproductive option. IMPLICATIONS FOR PRACTICE: Recommendations include: training and education in genetics for midwives who are the first point of contact for pregnant women; clinics to use a decision-making tool to emphasise the uncertainty involved in PGD and improved communication and psychological support to couples.
BAACKGROUND: Preimplantation genetic diagnosis was developed as an alternative to prenatal diagnosis for couples with a family history of genetic disease. After in vitro fertilization, the embryos can be analysed to ensure that only healthy embryos are transferred to the uterus. Past studies have suggested that couples who wish to avoid having a child with an inherited genetic condition look favourably on preimplantation genetic diagnosis as it prevents the need for termination of pregnancy following prenatal diagnosis of an affected fetus. However, it is important to understand the experiences of couples who have used or consider using this technique. METHODS: To ascertain the current evidence base on this topic, we conducted a mixed methods systematic review. Four databases were searched for relevant peer-reviewed papers published between 2000 and 2013. Of 453 papers, nine satisfied the inclusion criteria and were assessed for quality. Results of nine papers were analysed and synthesised using a narrative approach. FINDINGS: Three main themes emerged: (1) motivating factors; (2) emotional labour; (3) choices and uncertainty. The review has identified an emotional and difficult journey for couples pursuing preimplantation genetic diagnosis. While use of the technique gives hope to families who wish to prevent transmission of a genetic disease this is not without hard decision-making and periods of uncertainty. Lack of information was perceived as a barrier to access this reproductive option. IMPLICATIONS FOR PRACTICE: Recommendations include: training and education in genetics for midwives who are the first point of contact for pregnant women; clinics to use a decision-making tool to emphasise the uncertainty involved in PGD and improved communication and psychological support to couples.
Authors: G De Krom; Y Severijns; W L Vlieg; Y H J M Arens; R J T Van Golde; C E M De Die-Smulders; L A D M Van Osch Journal: J Assist Reprod Genet Date: 2020-05-16 Impact factor: 3.412