Improving Genetic Medicine for Ethnic Minority Groups

NCT07309835 | Not Yet Recruiting

• 1 other identifier: 360821
• Study Type: observational
• Target: 100
• Locations: 1 country
• Sites: 1

Brief Summary

A key aim of the nationally commissioned Genomic Medicine Service (GMS) in England is to encourage equity of access between different patient groups, however, there is evidence to suggest that it is being under-utilised by ethnic minority groups. The aim of this study is to explore how ethnic minority populations interact with the GMS and to identify changes that would promote equity within those services. This is a mixed-methods study using interviews and group discussions with lay people, community organisers and charity workers, people who have had direct or indirect contact with the genomic medicine service and professionals within the service. By including potential service users, service users and professionals in this work and allowing people to share their experiences in whatever method feels most comfortable to them, we aim to get a broad understanding of the lived experience of everyone involved in these pathways which will be key to gaining a holistic understanding of how they are working in real world settings. The primary outcome measure will be an increased understanding of the experiences of people from ethnic minority groups navigating the genomic medicine space. The secondary outcome measure will be an increased understanding of how experiences differ across and between ethnic groups. We intend to use our insights to recommend structural changes which will improve utilisation of the genomic medicine service by patients from ethnic minority groups.

Conditions

Genetic Testing

Keywords

interview; ethnic minority; mixed method; qualitative; genetic testing; genomic testing

Outcome Measures

Primary Outcomes (1)

• Qualitative insights into people's experiences

  increased understanding of the experiences of people from ethnic minority groups navigating the genomic medicine space

  5 years

Secondary Outcomes (1)

• Qualitative insights into differences between minority groups

  5 years

Study Arms (4)

Lay members of the public

Lay members of the public recruited from community settings

Community organisers and charity workers

Community and charity workers recruited from community settings

Patients, family members and carers

Recruited through a mixture of healthcare and community settings

Healthcare professionals

Recruited through professional networks

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

The study population is individuals who identify as being from ethnic minority backgrounds and community organisers, charity workers and health care professional who have insight into their experiences

You may qualify if:

• Adults
• Have capacity to consent to take part

You may not qualify if:

• Under 18 years of age
• Affected by a serious mental health condition
• Learning disabilities

Sponsors & Collaborators

• Guy's and St Thomas' NHS Foundation Trust: lead

Study Sites (1)

Guys and St Thomas' NHS foundation Trust

London, United Kingdom

Location

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: December 16, 2025
• First Posted: December 30, 2025
• Study Start: January 30, 2026
• Primary Completion (Estimated): January 30, 2031
• Study Completion (Estimated): January 30, 2031
• Last Updated: December 30, 2025

Record last verified: 2025-12

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL
• Time Frame: For 2 years after the end of the study.
• Access Criteria: On application to the CI.

Locations

GB (1)