1. Important Information
2. Contact us
2.1.1 by email: [email protected]; or
2.1.2 by post to 20-22 Wenlock Road, London, England, N1 7GU.
2.2 James Price is our data protection officer, who will be able to answer any questions you may have.
2.3 You have the right to make a complaint at any time to the ICO at www.ico.org.uk. We would, however, appreciate the chance to deal with your concerns before you approach the ICO, so please contact us in the first instance.
2.4 It is important that the data we hold about you is accurate and current, therefore please keep us informed of any changes to your personal data.
3. What personal data we collect as part of the Test and how we use it
3.1 Where you are to take a Test you will be required to complete certain forms and a sample of your DNA will be collected (Sample). The Sample together with the information you provide in the relevant forms is used by us in order to provide our services to you in respect of such Test and the Sample. As part of this process, we may collect, store and use the following personal data in the following ways:
3.1.1 we will collect contact data (name, address, email address and a contact telephone number) from you or your clinician or employer;
3.1.2 we collect your full name, date of birth, gender, racial or ethnic origin and other special categories of data, including genetic data contained within the Sample, your medical conditions, health risk factors and you and your family’s medical history. You will be asked to provide this information when completing our medical history form and consent forms. This information is required to understand your family history and hereditary markers you may have;
3.1.3 we will store:
(a) the Sample for a short period following the Report being generated (such period being no longer than 6 weeks);
(b) the genetic data used to generate the Report for a period of 5-6 years in accordance with industry standards and guidelines please see: The Retention and Storage of Pathological Records and Specimens – Institute of Biomedical Science (ibms.org) ; and
(c) the Report for an indefinite period, and
we may, where requested by your clinician, undertake further analysis of genes that did not from part of the original test request;
3.1.4 where the Report identifies a genetic variant whose significance is not yet known (a variant of unknown significance or VUS), we will process your personal data (including special categories of data) periodically to re-analyse the result and compare our findings with other third-party data available to us. This is so we can monitor whether a VUS is still present or a different analysis has become applicable and also forms part of general scientific research of VUSs and mutations in genes. We will notify you of any changes in the status of a VUS;
3.1.5 we will link your personal data, including the Report with the personal data (and any Reports) of your family members who have or may take a Test with Everything Genetic, where you have confirmed that you would like us to link your data with your family members;
3.1.6 in certain circumstances you may be directed by your clinician to take a Test (such as to inform your treatment choices) and where we test a Sample and provide a Report to you, this processing of special categories of personal data is necessary for the purpose of the potentially preventative medicine, medical diagnosis and/or provision of health care or treatment provided to you by your clinician;
3.1.7 in certain circumstances, where we have identified a VUS in the Report, the processing of special categories of personal data is necessary for the scientific research purposes or statistical purposes available by the re-analysis of the result of your Test.
3.2 We also collect, use and share aggregated data, including data available from public sources. However, if we combine aggregated data with your personal data so that it can directly or indirectly identify you, we treat this as your personal data.
3.3 We may anonymise your personal data (so that it can no longer be associated with you) and use such data and analysis of such data to conduct possible future interpretations of the results and analysis of Tests and for other research, educational, training and statistical purposes on an anonymised basis. We may transfer such anonymised data to third parties and we may use such anonymised data freely for our own commercial purposes.
3.4 When you complete a Test and submit the required information and data in relation to any dependants, we will need to process your dependant’s personal data (which may include special categories of their personal data).
3.5 If you fail to provide any personal data that we need to provide the services associated with the Test then we may not be able to provide our services to you, which includes analysing the Sample and preparing a Report. We will notify you of this at the relevant time.
3.7 We only use Labs based in the UK to process your data, therefore we do not transfer your data outside of the UK.
4. Change of purpose
4.1 We will only use your personal data for the purpose that we originally collected it for, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose or we have a lawful basis to change the purpose.
4.2 If we need to use your personal data for an unrelated purpose, we will notify you and we will explain the legal basis which allows us to use your personal data in this manner.
4.3 We may process your personal data (without your knowledge or consent) where this is required or permitted by law.
5 . Who we share your personal data with
5.1 We may share your personal data (including special categories of personal data) with:
5.1.1 the test provider through whom you have taken a Test (such as your clinician), acting as a controller of your personal data. We will share the Report produced with your clinician where you have asked us to do so;
5.1.2 if you have requested support services as part of your Test, we will share your contact information and the Report with the clinician engaged by us to provide such support services to you; and
5.1.3 our third party service providers, acting as processors (such as the Lab which processes your Sample and produces the Report) and with whom we will share your Sample on an anonymised basis;
5.1.4 your insurance provider or private healthcare provider where you are relying on medical insurance to cover the cost of the Test.
5.2 Where we engage third parties to process data on our behalf, we ensure wherever possible that appropriate measures are in place to respect the security of your personal data and any processing is done in accordance with the law.
6 . Data retention
6.1 We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements.
6.2 We may keep other personal information collected about you for other purposes for longer and we can use anonymised information indefinitely without further notice to you.
7. Your legal rights
7.1 Under data protection law, you have certain legal rights in certain circumstances. Your legal rights in relation to your personal data are set out in full in our general Privacy Notice available on our website. If you wish to exercise any of your rights, please contact us.