Explore our FAQs for essential information on our initiatives, resources and community support
General
What is the Black Health Legacy Study?
You can read about the Black Health Legacy study on our Mission page. Black Health Legacy is a health research study partnering with Black, Black African and Black Caribbean communities in the UK to create one of the most inclusive health research studies of its kind. With the goal of improving the health of Black African and Black Caribbean people by analysing the DNA and health of 100,000 individuals.
What is DNA?
DNA (Deoxyribonucleic Acid) is the set of instructions inside your body that makes you who you are. It is found in nearly every cell and forms your genetic code. It carries information you inherit from your biological parents, such as your hair type, eye colour, as well as how to make proteins which are the building blocks of our bodies. Scientists study DNA to understand how our bodies work, why some health problems affect certain groups more than others, and how to create better treatments.
Why is Black Health Legacy only for Black, Black African and Caribbean people and people from Mixed ethnic background that includes Black, Black African or Black Caribbean?
Black communities in the UK experience some of the poorest health outcomes, including higher rates of conditions like heart disease and type 2 diabetes. One major reason is that these groups have been historically underrepresented in health research.
Most genetic data used in studies comes from White European populations, which means researchers often lack the information needed to understand health risks specific to Black individuals. This gap makes it harder to develop effective treatments and improve outcomes.
Black Health Legacy focuses on Black, Black African, and Caribbean people to help close that gap and promote health equity through better representation in research.
What is the difference between Black Health Legacy and studies run by National Institute for Health and Care Research (NIHR) Bioresource, Genomics England, UK Biobank, Our Future Health, Ancestry or 23andMe?
These studies differ significantly, although all are involved in human genetics.
Improving Black Health Outcomes (IBHO) BioResource, is led by the NIHR BioResource in Partnership with Genomics England to improve knowledge and understanding of health conditions and their unique impacts on UK Black communities. Genomics England, owned by the UK Department of Health (NHS), studies NHS patients with specific cancers and rare inherited diseases in the 100,000 Genomes Project. IBHO are particularly focusing on sickle cell disease, whereas Black Health Legacy has prioritised type 2 diabetes, high blood pressure and kidney disease.
UK Biobank and Our Future Health are large UK-based studies with multiple partners researching across health and disease. However, both studies undertake much more detailed clinical assessments of their volunteers, including blood tests and more extensive checks. UK Biobank has completed its recruitment of volunteers and includes very few Black people
Ancestry.com and 23andMe are private companies that offer ancestry and specific health-related tests for sale to anyone. 23andMe do research, but this is not specifically focused on the health of Black people. 23andMe provides some feedback on your genetic information but these test result do not meet the standards offered by NHS genetic services, and may not fully reflect the genetic diversity of people from Black African and Black Caribbean ancestry so may be falsely reassuring or of uncertain significance. Black Health Legacy has followed other large, publicly funded research studies like Genes & Health, Improving Black Health Outcomes (IBHO) BioResource, UK Biobank and Our Future Health which do not routinely feedback genetic results to their volunteers.
Eligibility
Who is eligible to take part in the Black Health Legacy study?
Black Health Legacy is recruiting adult volunteers (aged 16 and above), who self-identify as Black, Black African, Black Caribbean, and Mixed or of Multiple ethnic groups that include Black, Black African or Black Caribbean. Additionally, they must live in the UK and be willing and able to consent to giving a saliva sample for DNA.
Do I have to be healthy to take part?
No. Anyone aged 16 or over, with or without health problems, from these backgrounds can participate.
I’m pregnant, can I still take part?
Yes, you can participate in Black Health Legacy, and it is safe to do so.
Some Black Health Legacy volunteers may be invited to join future optional research studies and if this happens to you, you can let the study team know that you are pregnant and have a discussion about whether to take part or not.
Another family member is taking part. Can I also take part?
Yes, family members are very welcome in the study. Some health conditions run in families, so involving family members will help us uncover how our genes affect our health.
I am fasting, can I take part?
Yes, for the saliva sample, you need to not drink water for at least half an hour before, so fasting can improve the sample quality.
How do I take part?
You can read all the information on how to take part by clicking on Join Now, where you will be shown an easy-to-read Patient Information Sheet. Taking part is quick and easy.
Do I get paid for taking part?
If you wish to be remunerated for the time it takes you to join Black Health Legacy, we can offer you a £15 shopping voucher.
Where can I join the study?
We have sites in London and Exeter, and are expanding across England. Please watch out for updates here. You can also sign up from home by clicking on this link. We will send you a saliva kit in the post. It’s easy and comes with a pre-paid return stamp.
What happens after I provide my saliva sample?
What happens after I take part?
Once you’ve taken part, your sample will be securely and confidentially stored at our accredited labs at Queen Mary University of London. We’ll also use the questionnaire you completed to securely access your NHS Health Records, strictly for research purposes so that we. can build a clearer picture of how genes influence health.
Some people may be invited to join future optional research studies (called “Health Legacy”) so that we can build a deeper understanding of certain health conditions. We will contact you up to 4 times a year to invite you to join these studies, and you are free to decide whether you would like to join or not.
I’ve signed up online. Does the saliva kit need special storage or urgent return?
No special storage is needed. Once you’ve sealed the funnel, mixed the contents, and secured the cap, the sample is stable at room temperature. You can send it back by post, using the provided return service at no cost to yourself.
How will this research benefit Black communities?
By making sure decisions about health and healthcare are based on information that properly represents Black people. This will lead to better prevention, diagnosis and treatment of health conditions that affect them.
Data and confidentiality
Will you sell or release my identifiable information?
No, we will never sell or release any information that could identify you (such as your name, address, date of birth, or contact details). Nor will we share identifiable information with other organisations, including the police or insurance companies. Additionally, your sample will be protected under GDPR – General Data Protection Regulation.
Will changes in English law affect the privacy of my samples or data?
We are committed to vigorously defending against any external attempts to access data. Maintaining confidentiality of identifiable health research data is vital for our university medical school’s work. Other large-scale genomics studies, like Genomics England, have secured written agreements from the Home Office to protect data, and we expect the same for our study.
Does your research involve cloning?
No, we will not perform cloning in Black Health Legacy
What happens to my data and samples if I want to withdraw from Black Health Legacy?
Samples held in our central lab in London will be destroyed, if you choose to withdraw from the study. Upon destruction, we will confirm with you that destruction of your sample has been completed.
How do we use your data?
Ensuring strong data security and governance is a top priority for the Black Health Legacy team, and we strictly follow General Data Protection Regulations and the standards set by the UK Framework for Health and Social Care Research. We also follow best ethical and legal practice, ensuring all information collected about you is handled in confidence.
Only the Chief Investigator and the core study team at Queen Mary University of London will have access to identifiable information about you, and this will be stored safely. Anyone provided access to your information for research purposes only, and will be trained in data protection, cyber security and information governance.
You can find out more about how we handle your personal information and data in our Patient Information Sheet.
Can I exit or withdraw from the study after registration?
Absolutely, you have the option to withdraw from the study at any time in the future. Simply get in touch with us at Healthlegacy@qmul.ac.uk and we will assist you in processing your request.
If you have further questions, please contact the study team at Healthlegacy@qmul.ac.uk
