We want to change the story for Black, Black African and Black Caribbean people in the UK when it comes to health.
- Ancestry
- Your ancestry tells the origin of your DNA code from your biological ancestors. Genetic ancestry can be put together with historical information to work out where in the world your ancestors came from. It is important to include people from a variety of different ancestry backgrounds in health research, because people from different ancestries have different patterns of genetic code and these can impact your risk of disease or how your body responds to different treatments.
- Anonymised
- Health Legacy will remove information that identifies you (“anonymise”) from our research database. Researchers working with Health Legacy who are not part of the core team will not be able to see identifiable information about you.
- Black Health Legacy Community Advisory Board
- Our study has been shaped and guided from the beginning by members of the Black, Black, Black African and Black Caribbean community. Our community advisory board brings together a diverse group of individuals who are passionate about improving the health of future generations through research. They are ensuring that Black Health Legacy works sensitively and effectively with the people it represents and prioritises work that is important to them.
- Data
- This is information about you, that might include personal information or anonymous information. In Health Legacy, we collect data to conduct our research, including health-related information, genetic information, or your questionnaire responses.
- Gene
- Your genes are like an instruction manual to help make proteins, the building blocks of our bodies. Genes control how our bodies look, grow and function.
- Gene sequencing
- This is a detailed technology to study your genetic code. It works across large areas of your genome, allowing researchers to build detailed knowledge of how your genes influence your body. Genotyping is also done in a laboratory or NHS setting using DNA often collected saliva or blood.
- General Data Protection Regulation (GDPR), 2018
- This is the legal framework that sets guidelines for the collection and processing of personal information to ensure your data is protected. Health Legacy, and its sponsor, Queen Mary University of London carefully follow all of the rules and regulations set out by GDPR that are applicable to them.
- Genome
- This is the complete set of DNA that your cells have. It includes the DNA that make up your genes as well as other stretches of DNA between your genes.
- Genotyping
- This is a technology that detects small genetic differences in your genetic code. It uses prior knowledge of the genetic differences that are impact your physical characteristics or risk of disease to study these differences. Genotyping is done in a laboratory or NHS setting using DNA often collected saliva or blood.
- Health-related information
- This is the information we collect about you from organisations like the NHS and Office for National Statistics. This information tells us about your health, or things that affect your health. This information is collected when you see your GP or hospital doctor or attend for checkups. Health-related information helps us to make important discoveries that will improve the health of future generations.
- Identifiable information
- This is personal information that can identify you. Most research studies need to collect this information to run and monitor their research properly. Health Legacy will collect 4 pieces of identifiable information: your name, your date of birth, your address and your NHS number. Access to this information is limited to a very small number of people who need it to conduct and monitor the study, and it is kept securely and used only when absolutely necessary.
- ISO27001 certification
- This is an international standard that demonstrates a high level of information security. Health Legacy stores its information in ISO27001 certified locations, and this shows our commitment to the highest level of information security.
- Trusted research environment (TRE)
- TREs provide approved researchers with a single location to access study data, and it is a bit like a secure reference library. Making research data available through a TRE means that people can be confident that their personal data is accessed securely and their privacy is always protected.
