title: The evidence base regarding the experiences of and attitudes to preimplantation genetic diagnosis in prospective parents.
abstract: BACKGROUND
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.affiliation: 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.
authors.forename: Jenny
authors.initials: J
authors.lastname: Cunningham
authors.affiliation: 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.
authors.forename: Lesley
authors.initials: L
authors.lastname: Goldsmith
authors.affiliation: 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.
authors.forename: Heather
authors.initials: H
authors.lastname: Skirton
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D003657:Decision Making; D005260:Female; D005817:Genetic Counseling / Q000523:psychology / Q000706:statistics & numerical data; D005820:Genetic Testing / Q000706:statistics & numerical data; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D010290:Parents / Q000523:psychology*; D011247:Pregnancy; D019836:Preimplantation Diagnosis / Q000523:psychology*; D011446:Prospective Studies
keywords: Decision making; Genetic testing; PGD; Pregnancy; Preimplantation genetic diagnosis