NHS Trisomy Screening and Testing: Survey Questions for Healthcare Professionals on Informed Consent

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. 

Important Information

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. 

Follow-up Interview

If you would like to partake in a follow-up interview after completing the survey, please contact me on e.o.wile@swansea.ac.uk or 07752211496. The interview will comprise of 20 questions and should last no longer than 30-40 minutes to complete. 

Contact Details

If you have any question about this study, please contact either Emyr Wile (lead researcher) on e.o.wile@swansea.ac.uk, or Professor Karen Morrow (primary supervisor) on k.morrow@swansea.ac.uk.

There are 29 questions in this survey.

A note on privacy
This survey is anonymous.
The record of your survey responses does not contain any identifying information about you, unless a specific survey question explicitly asked for it. If you used an identifying token to access this survey, please rest assured that this token will not be stored together with your responses. It is managed in a separate database and will only be updated to indicate whether you did (or did not) complete this survey. There is no way of matching identification tokens with survey responses.