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Dr Celine Lewis
First floor
Population, Policy and Practice,
30 Guilford Street
Dr Celine Lewis profile picture
  • Senior Behavioural Scientist
  • Population, Policy & Practice Dept
  • UCL GOS Institute of Child Health
  • Faculty of Pop Health Sciences

I am a behavioural scientist working in the field of genetic and genomic medicine. My work focuses on how patients and families relate to, communicate and make decisions around personal genetic information, and the subsequent behavioural, psychological and social outcomes. I have expertise in both qualitative and quantitative research methods including qualitative interviews and focus groups, observational work, and the development and validation of quantitative surveys and measures. Through my research I have worked with a range of key stakeholders including healthcare professionals and policy makers as well as patients, families and young people. My research combines scientific rigour with storytelling ability.

In 2021 I set up the qualitative research course 'Practicing Qualitative Research in Child and Adolescent Health' with Professor Myra Bluebond-Langer. This annual five-day course is aimed at postgraduate students as well as researchers at ICH/GOSH who want to develop the knowledge and skills to conduct their own qualitative research projects. I am Chair of the PPP Patient and Public Special Interest Group and I co-lead the Specialist Paediatrics II module on the MSc in Paediatrics and Child Health with Professor Monica Lakhanpaul. I am on the scientific programming committee for the European Society of Human Genetics conference, and am a member of the editorial board for the journal Prenatal Diagnosis. Since 2019 I have been a trustee for the charity Genetic Alliance UK. 

I have expertise in the development of patient information materials; in 2017 I was funded through a GOSH Children’s Charity grant to develop a series of animations for young people explaining genome sequencing. To date, the animations have received over 30,000 views on You Tube and won Best Animation in the West of England Royal Television Society Awards 2018. In 2010 I won a BMA patient information award for my leaflet supporting parents of undiagnosed children.

Research Summary

I am lead applicant on five successful funding bids (total amount £1,306,877) and co-applicant on a further two (total amount £605,968). I have authored over 70 peer reviewed papers and have written 2 book chapters. In 2018 I was selected as a finalist for the Joe Leigh Simpson Award for the Best Early Career Investigator. 

In 2020 I received a 4-year NIHR Advanced Fellowship to evaluate the implementation of the NHS Genomic Medicine Service during its early years, to identify barriers and enablers to successful implementation, and provide recommendations for practice. The focus in on the use of genomic testing for paediatric rare diseases. By the end of this study we will have 1) abetter understanding of the intended v actual outcomes of the Genomic Medicine Service; 2) insights into what happens during clinical encounters; 3) understand what the entire testing process is like for parents from being offered genomic testing to receiving their results and beyond, including the clinical as well as emotional and practical outcomes; and 4) understand how healthcare professionals feel about delivering the GMS, particularly those that are non-genetic specialists, including how prepared they feel to deliver genomic testing.  

Between 2018-2020 I led a Small Humanities and Social Science Grant from the Wellcome Trust where we conducted an international study comparing how patient and clinicians in different countries are dealing with the issue of uncertainty in prenatal genomics. The work was the foundation for an international Discrete Choice Experiment to understand patient preferences and attitudes towards receiving uncertain results.  

Between 2016-2019 I was co-applicant on an NIHR RfPB grant to explore the preferences, experience and outcomes of rare disease patients in the 100,000 Genomes Project. The study included a longitudinal survey (>500 patients/parents), observations of appointments and interviews with patients and health professionals. 

Between 2016-2018 I was co-applicant and lead researcher on an NIHR HTA study where we conducted the largest UK study to-date exploring bereaved parents’ views, preferences and likely uptake regarding less invasive post-mortem. The study included a cross-sectional survey with over 800 bereaved parents, interviews with parents and religious leaders, and focus groups with parents in the Muslim and Jewish communities.

In 2017 I was awarded one of seven inaugural Health Education England Fellowships to explore young people’s experience of genome sequencing. This research involved qualitative interviews with young people in the 100,000 Genomes Project and a survey with >800 young people evaluating the effectiveness of two animations that I developed explaining genome sequencing to young people. 

Between 2010-13 I led the psychosocial research arm of an NIHR funded RAPID study looking at service users’ views and experiences of new non-invasive prenatal tests (NIPT). The findings from this research fed into recommendations for the National Screening Committee for implementation of NIPT.

Teaching Summary

I teach a number of methodology courses at UCL Institute of Child Health including: Practicing Qualitative Research in Child and Adolescent Health, Conducting Qualitative Analysis, Qualitative Interviewing, How to Conduct a Systematic Review, and Critical Appraisal. 

I currently co-lead the Specialist Paediatrics II module on the MSc in Paediatrics and Child Health at UCL Institute of Child Health. 

I supervise a number of MSc projects at UCL and elsewhere, and am secondary supervisor to two PhD students. I am interested in supervising students working on topics including, but not limited to:

  • Lived experience of patients/parents with rare diseases
  • Clinical, psychological, social and behavioural outcomes of genetic and/or genomic testing
  • Outcomes from receiving secondary findings from genome sequencing
  • Decision-making in prenatal testing
  • Impact of receiving uncertain results following prenatal/postnatal testing
  • Consenting to genetic/genomic testing
  • Knowledge, understanding and attitudes of patients/parents towards genetic/genomic testing

Academic Background
2011   Doctor of Philosophy University of Plymouth
2003   Master of Arts University of Leeds
2002   Bachelor of Arts University of Leeds
  PGDipHSc Post Graduate Diploma in Genomic Medicine  
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