Dealing with uncertainty in prenatal genomics
Research type
Research Study
Full title
Dealing with uncertainty in prenatal genomics: an international comparison study
IRAS ID
254098
Contact name
Celine Lewis
Contact email
Sponsor organisation
Great Ormond Street Hospital
Duration of Study in the UK
0 years, 10 months, 30 days
Research summary
Technological advances in the field of prenatal testing mean that we can now diagnose more genetic conditions in the fetus than ever before. Whilst these new tests have created exciting opportunities for comprehensive prenatal diagnosis to inform pregnancy management, the ever increasing amount of genetic information that can be obtained raises ethical and counselling challenges associated with uncertain and unknown results. Uncertainty in the prenatal setting is particularly challenging as many parents enter into prenatal testing hoping for and expecting reassurance and may use prognostic information to make a decision about pregnancy termination. Whilst some prospective parents desire as much information as possible, potential uncertainty may raise anxiety and complicate decision-making. The overarching aim of this study is to explore how women (and partners) experience uncertainty in the prenatal setting. Specific questions that will be addressed include: what level of uncertainty are women (and partners) prepared to tolerate prenatally? What level of uncertainty are clinicians prepared to feedback? How might patients be best supported to tolerate uncertainty during pregnancy? What is the optimal amount of uncertainty information clinicians should communicate to patients to avoid negative outcomes? To answer these questions we will use empirical research methods including 1) interviews with women who have experienced some element of uncertainty following prenatal testing, 2) interviews with health professionals who feedback prenatal results to patients, and 3) a quantitative survey with pregnant women (and partners).
REC name
London - Riverside Research Ethics Committee
REC reference
18/LO/2120
Date of REC Opinion
26 Nov 2018
REC opinion
Favourable Opinion