Frequently asked questions

About Genes & Health Study team FAQs Your data Mental Health Research priorities Privacy notice

You can read lots of information about the Genes & Health study on our About our Study page here. Genes & Health is one of the world’s largest community-based genetics studies, with the goal of improving the health of Pakistani and Bangladeshi people by analysing the genes and health of 100,000 individuals. We link information about your genes (from a spit sample) with your NHS health records to study diseases and treatments.

South Asian people have some of the highest rates of heart disease, diabetes, and poor health in the UK. The majority of genetic data worldwide comes from white European individuals, and few ethnic minority people are included. The lack of diversity in research makes it hard to understand why South Asians are more at risk of these diseases. Amongst South Asians, Bangladeshi and Pakistani people are particularly underrepresented and affected by poor health, and this is why our study focuses on those two groups

These studies differ significantly, although all are involved in human genetics.

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. This project is distinct from Genes & Health as it combines research, clinical services, and NHS transformation in very focused areas of 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 (Our Future Health) and more extensive tests (UK Biobank). UK Biobank has completed its recruitment of volunteers and includes very few South Asian people.

23andMe and Ancestry are private companies that offer ancestry and specific health-related tests for sale to anyone. 23andMe do conduct high-quality research, but it varies from what Genes & Health aims to accomplish. 23andMe provides feedback on your genetic information, whereas Genes & Health does not.

Many Genes & Health researchers work across all of these studies to complement our own data and make more powerful discoveries.

Eligibility

Genes & Health is recruiting adult volunteers (aged 16 and over), both with and without health problems, from across England, who identify as Bangladeshi, British-Bangladeshi, Pakistani, or British-Pakistani.

Anyone aged 16 or over, with or without health problems, from British Bangladeshi or British Pakistani ethnic backgrounds who can take part in England can participate.

Genes & Health is exclusively recruiting individuals who identify as British Bangladeshi, or British Pakistani. This choice is due to the health challenges faced by these groups, our geographical locations, and because British Indian individuals are previously well-represented in other large studies like the UK Biobank. British Indian volunteers might like to consider taking part in a different study, South Asia Bio Bank

Yes, you can still take part in Genes & Health and it is safe to do so.

Some Genes & Health volunteers are invited to join more detailed 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.

Yes, family members are welcomed in the study. Family members have different genetics, and even for for identical twins, the influences of your genes on health can vary.

Yes, for the saliva sample, you need to not drink water for at least half an hour before, so fasting can actually improve the sample. If you are called for a recall study, we may ask for a blood donation, and for that it’s your decision whether you’re comfortable donating while fasting.

Taking Part

You can read all the information about taking part on our Volunteer Now page. Taking part is easy and quick. At a later date, you may be invited to take part in a more detailed study (called a ‘recall study’) and it is up to you whether to do this or not.

No, you will not receive payment for volunteering in Genes & Health.

Some volunteers are invited to take part in a more detailed study (called a ‘recall study’), and at that time you may be offered payment to cover your time, inconvenience, and travel costs. Payment amounts are based on volunteer involvement and are regulated by the Research Ethics Committee.

Yes! Click the “Volunteer Now” button at the top of the page, and we will send you a spit kit in the post. It’s easy and has a free post return included.

Yes, you can assist in filling out the English version of the forms on their behalf, ensuring the answers reflect their views. We did previously have translations of the consent form and questionnaire in Bangla and Urdu, but found these were not liked by volunteers and could be inaccurate. Also, our bilingual team are always happy to help translating.

However, volunteers must personally sign and date the Volunteer Consent form as a study requirement.

What happens after volunteering

We will securely transport and store your sample at our accredited laboratory facilities at Queen Mary University of London. Your sample will be assigned a unique study code to ensure that it remains private and confidential and to link it securely to your de-identified NHS health information in our Trusted Research Environment. Your spit sample will be analysed using genetic tools and combined with analysis of health information to build a picture of how your genes and health interact. All research on Genes & Health information undergoes careful review by our Executive Board, with regular input from our Community Advisory Group. All Genes & Health research is conducted under ethics approval from the Health Research Authority under the sponsorship of Queen Mary University of London.

We will securely store your sample, most of which will be kept at the Blizard Institute at Queen Mary University of London or at the national UK BioCentre. We aim to understand how genes influence disease and may use some of your sample to study your genetic code through sequencing or other lab tests. All health research will be approved by our community and scientific advisory boards.

We do not provide volunteers with genetic results from their spit sample. We follow established guidance on this, supported by the Medical Research Council and Wellcome Trust as well as other large genetic studies.

Some volunteers will be invited to participate in further detailed research studies (called a ‘recall study’). If volunteers wish to know the reason they have been invited to these studies, then the research team will be able to discuss this with them. During these studies, if the research team uncovers anything ‘clinically actionable’ (e.g. severe anaemia, or undiagnosed diabetes) then they will contact you and your GP to follow up on these.

No, once you’ve closed the funnel, mixed the tube, and replaced the cap, it is fine at room temperature. You can send it back using the business reply service at no cost to yourself, just remember to post it back!

Data and confidentiality

Yes, more than one family member can participate. Your genetics are different, and even for identical twins, health outcomes can vary. We consider relatedness in statistical analysis.

Yes, for the saliva sample, you need to not drink water for at least half an hour before, so fasting can actually improve the sample. For blood donation, it’s your decision whether you’re comfortable donating while fasting, but we’re willing to collect the sample.

The information related to volunteers’ DNA will be available to health researchers globally within a secure compute environment (known as a Trusted Research Environment). Researchers come to the data in our data centre. We do not give researchers downloads or copies of your data. All the information will be made anonymous and cannot be traced back to you.

No, we de-identify your health information carefully and securely and only give our research teams access to de-identified data. We assign anonymous code numbers to your information for the purposes of linking genetic and health information in our research.

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.

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.

Cloning has a lot of different meanings in scientific research. We do not routinely perform cloning in Genes & Health.

Some volunteers may be invited to participate in more detailed research studies (recall) and occasionally these studies may wish to work on cells isolated from blood samples. Cells can sometimes be used to make ‘induced pluripotent stem cells’ (iPSCs) that offer significant potential to understand disease and treatment at a cellular level. The Genes & Health Community Advisory Group and British Islamic Medical Association are supportive of this research, but we will always ask volunteers for their permission if we are going to work on iPSCs.

Samples held in our central lab in London will be destroyed. It will not be possible to destroy samples already prepared for testing or to withdraw samples that have been distributed to other laboratories with whom Genes & Health collaborates. It will not be possible to delete information obtained from your samples or medical records from the research databases or laboratory notebooks. However, no new data will be added to the research databases or notebooks from the moment the Genes & Health team has confirmed your withdrawal. Your personal details will not be held in the research database or laboratory notebooks at any time. Your pseudonymised NHS number will be removed, removing linkage between genetic and health record data.

Ensuring robust data security is the highest priority for the Genes & Health team. When you take part in Genes & Health you donate a small sample of your spit (2ml), which is the equivalent of half a teaspoon. You also give us permission to access your NHS health information.

Your spit sample with be analysed in a laboratory, where our scientists will have a close look at your DNA. Your sample will be assigned a unique study code to ensure that your data and information remains private and confidential. We then use a special pseudonymised link code to connect your genetic information with your NHS health information to study diseases and treatments. Our data is kept in a highly-secure Trusted Research Environment (fully ISO27001 Certified).

Absolutely, you have the option to withdraw from the study at any time in the future. Simply get in touch with us at [email protected], and we will assist you in processing your request.

Participating in recall studies

No, you have been invited to participate in a recall study because we are trying to learn more about a specific area of health or disease. You do not need to agree to participate in recall studies. We select people to join these recall studies for a variety of reasons, including your genetic makeup and/or specific health information. We often invite people to recall studies because they are healthy. If you wish to know the reason that you have been invited to a recall study, you may talk to the research team when you attend.

Absolutely, taking part is completely your choice.

Taking part in recall studies is completely your choice and you do not need to say yes.

If you are unable to attend your appointment, please send us an email at [email protected] or text the mobile number from which you received your appointment confirmation text.

We will take no more than 50 millilitres of blood which is about 4 tablespoons and is perfectly safe.

It depends on the study visit that you have been invited to. The study team will notify you before your appointment if you need to stop or change any of your medication prior to your study visit.

Please bring any regular medication with you to your appointment.

We recommend that you wear comfortable clothing. If you are coming for a blood test then something light where your arm will be easily accessible.

Yes, light refreshments will be provided.