Do I have to be healthy to take part?
No, volunteers with pre-diagnosed health conditions are able to participate. Different studies are interested in different volunteers so although you may be excluded from one study because you have a health condition you may be an ideal candidate for another study.
Do I have to take drugs to be involved in NIHR BioResource studies?
No, you do not have to take drugs to help our research. We work with many different researchers and support a wide variety of studies with ranging commitments on behalf of the volunteers. The most common types of study supported by the BioResource are those that require the volunteer to provide a single blood sample. Other studies may have other requirements, such as undertaking cognitive tests or fasting. There is no obligation or expectancy on you to take part when you are invited to participate in a study, so you are free to decline at any time without giving any reason.
Do I get paid for taking part?
You do not receive any money for joining NIHR BioResource but you may be offered some remuneration for participating in certain studies to cover your time and any inconvenience. If participation in a study is reimbursed the amount of payment is calculated based on the level of volunteer involvement in the study and what the study requires you to do. For some studies there will be no payment at all or the payment will be minimal. This reflects the fact that we are funded purely for medical research on a not-for-profit basis. Most of our volunteers take part as an act of generosity rather than for financial reward.
Can I have feedback about my genes?
Your samples are processed anonymously to make it impossible for anyone in the research team to link your genetic information to you. We therefore cannot offer you any feedback about your genes.
Will you pass on my genetic information to other organisations such as insurance companies, the NHS or the police?
No, we do not share your genetic information with any other organisations. See our page on confidentiality for further details.
Who will have access to my personal data and genetic information?
We utilise a process called ‘pseudo-anonymisation’, which ensures that research staff who work on your samples cannot identify you. The database that holds the genotyping data is separate to the one that holds identifiable data. Access to both databases is restricted. The database that holds all personally identifiable information such as names, addresses and the answers provided in your questionnaire can only be accessed by the clinical team who may contact you in the future about your participation in research studies. The database that holds the genetic information is accessed by the research team and a limited number of the data services team only who do not have access to the database that holds personal information. We do not share any of your personal data with other organisations. See our page on confidentiality for further details.
What happens if you find out something about my health when I participate?
When you join NIHR BioResource we do not screen your enrolment sample or use it to investigate your health. The sample is used to ascertain whether you have the genes of interest for studies we are recruiting to. Most research studies that you may be invited to participate in, do not offer feedback on your health. However, if you are invited to take part in a study that does involve tests that could provide indicators of your health you will be informed of this prior to participating. We do not complete health screening on blood samples but if you provide a blood sample for a study and there is something very clearly unusual about it we will contact you and suggest you visit your GP. There is therefore a small potential for you to find out information about your current health as a result of taking part but nothing that would not be highlighted by normal health screening. The studies will never give you a diagnosis or any information about your genotype so there is no possibility that you will be told anything that has implications for your current or future health as a result of your genetic makeup.
If I am invited to participate in a study does it mean I am at risk of developing a disease?
No, being invited to take part in a study does not indicate that there is any risk to your health. The diseases we are investigating involve many interacting genes in addition to possible lifestyle and environmental factors. It is therefore usually impossible for researchers to infer anything about your health based on these genotypes alone.
I don’t live near one of the centres, can I still get involved?
Yes, volunteers do not have to live close to one of our seven centres. If you would be willing to travel to take part in studies or if you live within a couple of hour’s drive from any of our centres we would still like to hear from you.
Anyone living further afield can still participate by donating a saliva sample for DNA analysis. Please read the pages on donating saliva.
Are there any age limits on participation in the NIHR BioResource?
Participation at all centres is open to anyone aged 16 and over. Cambridge are recruiting volunteers aged 6 or over. There is no upper age limit.
How often will I be contacted if I join NIHR BioResource?
You may be invited to participate in a maximum of four studies a year. You can decide each time you receive and invitation whether or not you would like to participate in that study.
What if I change my mind about being involved?
You can withdraw from NIHR BioResource at any time and without giving any reasons. If you no longer wish to be involved please let us know so we can withdraw you from the panel. For more details please see our withdrawal page.