Genetic TestingNCT07309835
Improving Genetic Medicine for Ethnic Minority Groups
An observational study of Genetic Testing, run by Guy's and St Thomas' NHS Foundation Trust at 1 site in United Kingdom.
Trial 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. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Genetic Testing
- How many people
- 10 participants
- Where
- 1 siteUnited Kingdom
- Study dates
- 17 Mar 2026to 30 Sep 2026
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
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
Who may be able to join
- Adults
- Have capacity to consent to take part
Who cannot join
- Under 18 years of age
- Affected by a serious mental health condition
- Learning disabilities
Trial locations and contacts
1 site in 1 country.
About this study
Official title: Capturing Ethnic Minority Experiences of Genomic Pathways to Understand What Changes Are Needed to Promote Greater Equity Within the Genomic Medicine Service.
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, the investigators 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. The investigators intend to use our insights to recommend structural changes which will improve utilisation of the genomic medicine service by patients from ethnic minority groups.
Read the detailed description
In 2019 a nationally commissioned Genomic Medicine Service (GMS) was established to deliver high-quality genomic testing for patients affected by rare diseases and cancer in England. A key aim of the new GMS was to encourage equity of access between different patient groups, including ethnic minority groups. A report produced by the NHS Race and Health Observatory in 2024 pointed to several barriers which remain to be addressed in trying to ensure that people from diverse backgrounds can access GMS services and genomic research and highlighted that a paucity of ethnicity recording makes it difficult to measure equity of access between different ethnic groups.
Insights into the lived experiences of ethnic minority groups with reference to genomic testing in the UK are limited. Even when studies have included diverse voices, they are often aggregated with other minority ethnic groups, assuming collective experiences.
The investigators will conduct 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. Some of our participants will be recruited from community settings. Others will be recruited from healthcare settings where they will be identified from a mixture of retrospective and prospective recruitment.
The overarching aim of this study is to capture the experiences of ethnic minority populations within regional genomic medicine services and to identify specific changes that are needed to promote equity and cultural competence within those services. While the investigators recognise that it will not be possible to derive recommendations which are applicable across all ethnic minority groups and the entire GMS, our work will serve as an exemplar to others who wish to undertake similar work with their specific population.
- Conditions
- Genetic Testing
- Keywords
- interview, ethnic minority, mixed method, qualitative, genetic testing, genomic testing
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| 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 |
What is being measured
The primary outcome is the main question the study is designed to answer.
Qualitative insights into people's experiences
increased understanding of the experiences of people from ethnic minority groups navigating the genomic medicine space
Measured: 5 years
Secondary outcomes (1)
Qualitative insights into differences between minority groups
increased understanding of the experiences of people from ethnic minority groups navigating the genomic medicine space
Measured: 5 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted30 Dec 2025
- Study start17 Mar 2026
- Primary completion30 Sep 2026
- Study completion30 Sep 2026
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Genetic TestingStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Other
- Enrolment
- 10 participants (actual)
Sponsor and investigators
- Lead sponsor
- Guy's and St Thomas' NHS Foundation Trust
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07309835
- Sponsor's protocol ID
- 360821
- Status last verified
- Oct 2026
- First submitted
- 16 Dec 2025
- Last updated
- 7 Oct 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes: The protocol will be shared. No personal identifiers will be shared with other researchers, but de-identified transcripts will be shared on application to the CI.
Study at a glance
From the registry record, last updated by the sponsor on 7 Oct 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Capturing Ethnic Minority Experiences of Genomic Pathways to Understand What Changes Are Needed to Promote Greater Equity Within the Genomic Medicine Service.
- ClinicalTrials.gov ID
- NCT07309835
- Acronym / sponsor ID
- 360821
- Conditions
- Genetic Testing
- Keywords
- interview, ethnic minority, mixed method, qualitative, genetic testing, genomic testing
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 10 participants (actual)
- Lead sponsor
- Guy's and St Thomas' NHS Foundation TrustUniversity, hospital or other
- Study start
- 17 Mar 2026 (actual)
- Primary completion
- 30 Sep 2026 (actual)
- Study completion
- 30 Sep 2026 (actual)
- First posted
- 30 Dec 2025 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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, the investigators 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. The investigators intend to use our insights to recommend structural changes which will improve utilisation of the genomic medicine service by patients from ethnic minority groups.
Detailed description
In 2019 a nationally commissioned Genomic Medicine Service (GMS) was established to deliver high-quality genomic testing for patients affected by rare diseases and cancer in England. A key aim of the new GMS was to encourage equity of access between different patient groups, including ethnic minority groups. A report produced by the NHS Race and Health Observatory in 2024 pointed to several barriers which remain to be addressed in trying to ensure that people from diverse backgrounds can access GMS services and genomic research and highlighted that a paucity of ethnicity recording makes it difficult to measure equity of access between different ethnic groups.
Insights into the lived experiences of ethnic minority groups with reference to genomic testing in the UK are limited. Even when studies have included diverse voices, they are often aggregated with other minority ethnic groups, assuming collective experiences.
The investigators will conduct 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. Some of our participants will be recruited from community settings. Others will be recruited from healthcare settings where they will be identified from a mixture of retrospective and prospective recruitment.
The overarching aim of this study is to capture the experiences of ethnic minority populations within regional genomic medicine services and to identify specific changes that are needed to promote equity and cultural competence within those services. While the investigators recognise that it will not be possible to derive recommendations which are applicable across all ethnic minority groups and the entire GMS, our work will serve as an exemplar to others who wish to undertake similar work with their specific population.
Study design
- Observational model
- Other
- Time perspective
- Other
- Number of arms
- 4
| Arm | Type | Receives |
|---|---|---|
| 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 |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
- 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
Key inclusion criteria (2 listed)
- Adults
- Have capacity to consent to take part
Key exclusion criteria (3 listed)
- Under 18 years of age
- Affected by a serious mental health condition
- Learning disabilities
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Qualitative insights into people's experiences
Time frame: 5 years
increased understanding of the experiences of people from ethnic minority groups navigating the genomic medicine space
1 secondary outcome
Qualitative insights into differences between minority groups
Time frame: 5 years
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 7 Oct 2026.
- Individual participant dataSharing planned: Yes. The protocol will be shared. No personal identifiers will be shared with other researchers, but de-identified transcripts will be shared on application to the CI.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Genetic Testing, run by Guy's and St Thomas' NHS Foundation Trust at 1 site in United Kingdom.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 7 Oct 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United Kingdom. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Qualitative insights into people's experiences (time frame: 5 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 7 Oct 2026.