Thinking of participating in the 100,000 Human Genomes Project?
NHS England is seeking some 75,000 participants to have their genomes sequenced as part of a project to build a database of patients' genomes.
Here are some FAQs for anyone considering taking part:
Am I eligible to have my genome sequenced?
At the moment, Genomics England only has funding to sequence patients' genomes in England, but discussions are taking place with Scotland, Wales and Northern Ireland.
An initial tranche of 11 hospitals will be seeking participants, with further hospitals in England joining later. They are looking for:
Patients with a rare disease
Close blood relatives of patients with a rare genetic disease
Patients with cancers of the breast, prostate, bowel, ovaries and lungs
What will the NHS do with my genetic data?
After samples are collected, participants will have to give consent for them to be sequenced, for information to be collected and for Genomics England to give controlled access to this data.
They will then be sent securely to Illumina - an American company headquartered in San Diego. Illumina has been tasked with sequencing the whole genome and analysing it.
Information will then be sent back to your doctor, and stored in a secure genome reading library for professionals and medical companies.
How will it benefit me?
Genomics England says on its website:
For patients with genetic diseases, sequencing can "significantly" increase the chances of a formal diagnosis, according to Genomics England.
Sequencing may also be used to narrow down the range of medicines and treatments on offer to patients. For example, genetic sequencing is already used to see whether women with breast cancer are HER2 positive, which determines whether or not the drug Herceptin will be very effective.
Can other people see my genetic data?
All data is anonymous, meaning that it will not be connected with a person's name or location on the database.
Your doctor and medical team will be able to see your data only when it is being used specifically for your health care.
Geonomics England acknowledges there is a "very small risk" that someone with "sufficiently detailed information" about you could identify your data, although it stresses that this would be "very difficult to do".
People can only access the database for health purposes and must undergo an identity check and have their research proposal approved by a committee at Genomics England. They will not be able to take away any data.
Will it affect my insurance?
Data from the project will not be shared for insurance or marketing purposes. The data would also be useless to insurers since it is anonymised (see above).
The Association of British Insurers has confirmed that participants in the 100,000 Genomes Project do not have to disclose their whole genome sequence results to insurers.