We want to change the story for Black, Black African and Black Caribbean people in the UK when it comes to health.

For Black Health Legacy to make new discoveries that could improve the health of future generations of Black, Black African, Black Caribbean people, we need information about your health and genes.

Health-related information: we will securely collect information from NHS General Practices and Hospitals; other healthcare organisations and providers; registers and records held by the NHS including NHS Digital, NHS Central Register, NHS England, NHS Personal Demographics Service, Department of Health, and Office for National Statistics for the duration of the study. This includes diagnoses, clinical measurements, test results, and treatments recorded during your lifetime. We will collect information on determinants of health which includes social and environmental factors linked to health, such as air pollution or socioeconomic deprivation levels in the area you live in, or whether you smoke. The Black Health Legacy Executive and Community Advisory Board will review what information we collect to ensure it has a direct link to health and addresses the aims of our study.

Genetic information: your saliva sample contains DNA which we will extract in a laboratory. From this DNA, we can study your genetic code to explore the links between genes and health. Everyone’s genes are different, and it is possible to see particular patterns in people’s genes according to where their ancestors come from. We will use scientific techniques such as genotyping and gene sequencing to study these patterns and make discoveries that will have direct relevance to Black, Black African and Black Caribbean people. Any spare saliva sample will be stored securely for future testing in this study.

Best ethical and legal practice will be followed to ensure all information collected about you will be 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 will be trained in data protection, cyber security and information governance.

Please note, we will not usually let your GP know that you have joined Black Health Legacy. However, in the unlikely situation that we discover something important about your health that needs action, we will discuss this with you and ask your permission to contact your GP.

We will need to use information from you and other sources such as NHS General Practices and Hospitals; other healthcare organisations and providers; and registers and records held by the NHS including NHS Digital, NHS Central Register, NHS England, NHS Personal Demographics Service, Department of Health, and Office for National Statistics for this research project. 

This information will include your:

• Name 
• Date of birth
• Address 
• NHS number
• Health-related information for e.g. medical conditions, treatments
• Questionnaire

People will use this information to do the research or check your records to make sure that the research is being done properly.

People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead.

Queen Mary University of London is the sponsor of the research.

Queen Mary University of London is responsible for looking after your information. We will share your information related to this research project with the following types of organisation: 

• Approved research sites and laboratories. These may be located in:  
• A hospital  
• University  
• Non-profit institution or  
• Company

• Strictly controlling who has access to your information and samples. 

• Using information that identifies you only when absolutely necessary, and by a very limited number of individuals in the core team with appropriate training.

• Giving your samples being sent to the laboratories and information anonymous, unique study numbers so that you cannot be identified by researchers working with Black Health Legacy outside the core team.

• Using the highest security research data storage facilities (a “Trusted Research Environment”) with robust data security and confidentiality procedures.

• Only allowing the transfer of samples and information outside our research sites when necessary, and only to facilities that have been approved by Black Health Legacy and under a legal agreement with Queen Mary University of London. These transfers will only happen once a legal data sharing and/or material transfer agreement is in place to ensure they are protected. We will not share identifiable information about you with external research sites and laboratories.

We may share information about you and/or samples outside the UK for research-related purposes to: 

• Allow Black Health Legacy-approved researchers/research organisations to undertake studies that will benefit the wider population around the world. 
• Carry out tests and analyses that might not be available in the UK if required.

If this happens, we will only share the information that is needed. We will also make sure you cannot be identified from the data that is shared, where possible. This may not be possible under certain circumstances – for instance, if you have a rare illness, it may still be possible to identify you. If your data is shared outside the UK, it will be with the following sorts of organisations:

• Black Health Legacy approved research teams, including those at:
  • Academic organisations
  • Healthcare providers
  • Medical charities
  • Laboratories 
  • Life sciences partners
• IT services or research facilities that offer services required for our health-related research that are only available or better outside the UK

We will make sure your data is protected. Anyone who accesses your data outside the UK must do what we tell them so that your data has a similar level of protection as it does under UK law. We will make sure your data is safe outside the UK by doing the following:

• The countries your data will be shared with have an adequacy decision in place. This means that we know their laws offer a similar level of protection to data protection laws in the UK.

• We use specific contracts approved for use in the UK which give personal data the same level of protection it has in the UK. For further details visit the Information Commissioner’s Office (ICO) website: https://ico.org.uk/for-organisations/uk-gdpr-guidance-and-resources/international-transfers/

• We do not allow those who access your data outside the UK to use it for anything other than what our written contract with them says.

• We need other organisations to have appropriate security measures to protect your data which are consistent with the data security and confidentiality obligations we have. This includes having appropriate measures to protect your data against accidental loss and unauthorised access, use, changes or sharing.

• We have procedures in place to deal with any suspected personal data breach. We will tell you and applicable regulators when there has been a breach of your personal data when this is legally required. For further details about UK breach reporting rules visit the Information Commissioner’s Office (ICO) website: https://ico.org.uk/for-organisations/report-a-breach

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can identify you as a study volunteer.

We will keep your study data for a minimum of 5 years. The study data will then be fully anonymised and securely archived or destroyed.

• You can stop being part of the study at any time, without giving a reason but we will keep information about you that we already have.
• If you choose to stop taking part in the study, we would like to continue collecting information about your health from NHS central records. If you also object to this to happen, tell us and we will stop.
• You have the right to ask us to access, remove, change or delete data we hold about you for the purposes of the study. You can also object to our processing of your data. We might not always be able to do this if it means we cannot use your data to do the research. If so, we will tell you why we cannot do this.
• If you agree to take part in this study, you will have the option to take part in future research using your data saved from this study. 

You can find out more about how we use your information:

• At www.hra.nhs.uk/patientdataandresearch 
• By asking one of the research team
• By sending an email to healthlegacy@qmul.ac.uk
• By emailing the sponsor: data-protection@qmul.ac.uk

Personal information that identifies you will be stored at Queen Mary University of London on secure servers (GDPR compliant with ISO27001 certification), accessible only by the Chief Investigator and core research team. 

Anonymised health-related and genetic information will be stored in a Trusted Research Environment (GDPR compliant with ISO27001 certification). It will not be possible to export information out of the Trusted Research Environment without review by the Chief Investigator or an appropriately trained member of the core research team who will ensure that confidentiality is maintained.

We will look after your saliva sample and store it safely – the sample will be labelled only with a unique code and sent to a specialist laboratory in London for analysis in order for us to understand your DNA. Your name or any other information that can identify will not be sent to the laboratory. Some of the saliva samples will be securely stored for the duration of the study in a dedicated storage space that will only be accessed by the research team members. The samples may be used by Queen Mary University of London and approved research within a hospital, university, non-profit institution or a company laboratory within and/or outside the EU. All unused samples at the end of the study will be destroyed.