Thank you for demonstrating an interest in the research.
What is the purpose of this study?
This study is part of a broader PhD research project exploring whether expectant parents are giving informed consent for NHS trisomy screening and testing. With the recent UK NSC recommendation to implement screening and testing for Edwards' Syndrome and Patau's Syndrome into existing Down's Syndrome screening programmes, this study is the first of its kind exploring the legal standard of consent and trisomy screening from the perception of both expectant parents and healthcare professionals, across England and Wales. Furthermore, with the implementation of non-invasive prenatal testing (NIPT) by the NHS in Wales in 2018, and its anticipated implementation by the NHS in England, it only amplifies the need to explore this area.
With the recent decisions in Montgomery (2015) and Mordel (2019) recognising that current models of care are based on the patients' right to self-determination and autonomy, this raised novel questions around the standard of informed consent for medical treatment and antenatal screening. This study's primary aim is to correctly inform current policy standards and guidelines of the recent legal developments, and to spotlight potential areas for amendment or revision.
Who can take part in the study?
Healthcare professionals, based in England or Wales, who currently perform a role on the NHS trisomy screening and testing pathways.
What does this study involve?
As part of the study, you will be required to answer 29 questions pertaining to informed consent and trisomy screening/testing. You will also be required to provide an explanation for the answer you gave beneath each question.
How long will it take?
This survey should take no longer than 15 minutes to complete.
Participation in the study is entirely confidential and anonymous. However, as part of the study, you will be required to disclose; (i) the country in which you work, and (ii) what your professional role is on the NHS trisomy screening and testing pathway.
If you would like to partake in a follow-up interview after completing the survey, please contact me on firstname.lastname@example.org or 07752211496. The interview will comprise of 20 questions and should last no longer than 30-40 minutes to complete.
If you have any question about this study, please contact either Emyr Wile (lead researcher) on email@example.com, or Professor Karen Morrow (primary supervisor) on firstname.lastname@example.org.