You are free to withdraw from this study at any time without giving reason and without detriment to your medical care. Parents can withdraw their children or other family members or consultees their loved ones (if the patient does not have capacity to decide for themselves).
There are two options to consider when withdrawing:
This option is for situations where you would be content for data to continue to be used for research, but want no further contact:
We will update our records to ensure you are not contacted
We will continue to update and store information from your health and other records for use in approved research
This option is for situations where you no longer wish for data to be used for research and want no further contact.
Delete the personal information we hold about you / your child / loved one
Destroy you / your child / loved one’s DNA sample
Delete your / your child / loved one’s genetic information (if it has not already been included in an analysis)
Contact you / your child / loved one directly
Continue to update and store information from you / your child / loved one’s health and other records
Allow new research access to information that is held about you / your child / loved one’s
Use your information for purposes other auditing
Remove data from research that is underway or has already been done but the information we hold at this stage is de-identified, meaning no-one would know anything was related to you / your child / your loved one.
Remove original records held by the NHS and an audit trail confirming you / your child / your loved one’s participation in GenOMICC will remain with the NHS
If you would like to withdraw from the study, please first contact the team at the hospital where you joined to let them know. Otherwise, contact us and we can connect you. You can reach us by email at genomicc@roslin.ed.ac.uk.
