PGD in Wales V 1.0

• Research type

  Research Study

• Full title

  Experiences of Pre-Implantation Genetic Diagnosis in Wales

• IRAS ID

  178164

• Contact name

  Erin Anderson

• Contact email

  andersonek1@cardiff.ac.uk

• Sponsor organisation

  Cardiff University

• Duration of Study in the UK

  0 years, 7 months, 20 days

• Research summary

  Pre­implantation Genetic Diagnosis (PGD) is a genetic technology which is used as an adjunct to in vitro fertilisation (IVF) in order to create embryos outside the womb, which may then be tested for a specific inherited genetic conditions. Embryos free of the disease tested for may then be implanted into the womb with the goal of establishing an unaffected pregnancy. There are currently no publicly funded clinics in Wales licensed to perform PGD and therefore all Welsh patients must travel to England for treatment, and this study aims to explore the experiences of these patients.

  Qualitative data on the patient experience will be gathered through semi­-structured interviews, during which study participants will be asked to describe their experiences of PGD, and to further reflect on their emotional and psychological approaches and responses to the decision making and treatment experiences they experienced in connection with the offer or use of PGD.

  Specific areas for exploration will include; the patient experience of finding out about PGD technology and treatment; patient understanding of what PGD treatment entails (both physically and emotionally), patient’s reasons for choosing or eliminating PGD as a reproductive option for their family.

  Participants will also be asked to explain their understanding and perspective on the current unavailability of PGD in Wales, and they will be asked whether the current NHS service structure had any impact on their decision making.

  It is hoped that the findings of this research may help to provide insight into the practical, social and psychological reasons that Welsh patients choose or reject PGD. It also seeks to ascertain whether the current lack of local service provision within Wales impacts upon patient’s decision making. This may help determine whether the full reproductive needs of users of the genetics service in Wales are currently being met with relation to PGD.

• REC name

  South East Scotland REC 01

• REC reference

  16/SS/0040

• Date of REC Opinion

  16 Feb 2016

• REC opinion

  Further Information Favourable Opinion