Informed consent for genetic and genomic testing
Please read this before you order a test. It explains what the test involves, what the results can and cannot tell you, how your sample and data are handled, and the choices you have. Keep a copy for your records. If anything is unclear, contact us using the details at the end before you proceed.
1. Who we are
Syndicate Bio Ltd, trading as direct by syndicate bio, of No 18 Chief Samuel Ajayi Street, Magodo Phase 2, Lagos, Nigeria, provides the testing described here and is the data controller for your personal data.
2. Purpose of the test
The test you select analyses your genetic material to provide information relevant to your health, your carrier status, or your inherited cancer risk, depending on which test you order. The specific purpose of each test is described on the ordering page and in your report.
3. What taking part involves
- A sample is collected from you, usually blood or saliva.
- The sample is analysed in our laboratory. Depending on the test, this includes sequencing part or all of your genome.
- A report is prepared and returned to you. Where a pathogenic finding is reported, we provide one genetic counselling session free of charge.
4. What the results can and cannot tell you
A result may be positive, negative, or inconclusive, and some findings are variants whose meaning is not yet understood. A negative result does not remove all risk, and a positive result does not always mean a condition will develop. Genetic testing has limits, and results should be read together with your clinical history and, where appropriate, professional genetic counselling. Testing is not a substitute for medical advice or routine screening.
5. Scope of your analysis
We analyse and report only on the test you ordered. We do not examine the rest of your genome or look for unrelated findings, so incidental or secondary findings do not arise from your test.
6. Benefits
Your results may inform decisions about your health, help your doctors, and in some cases have value for your relatives. Some people find the information reassuring, and others find it useful for planning.
7. Risks and limitations
The main risks are informational. Results can cause worry, may carry implications for family members who share your genes, and in some settings genetic information can affect matters such as insurance. There is also a small chance of laboratory error or of a sample failing, in which case we will tell you and, where possible, repeat the test.
8. Your sample: storage and disposal
We keep your sample for 10 years to allow for repeat or confirmatory testing, after which it is destroyed in line with laboratory standards. You may ask us to dispose of your sample earlier by contacting us.
9. Your data and privacy
We process your personal data in line with the Nigeria Data Protection Act 2023. We collect your contact details, the test you order, your sample, and the data generated from it. Genetic and health data are sensitive personal data, and we treat them accordingly.
- Access is limited to authorised staff and processors who need it to provide the service.
- We keep your identifiable data for 10 years, then delete or anonymize it.
- We may share data with laboratory partners and service providers who help us deliver the test, and with authorities where the law requires it. Any transfer outside Nigeria is done under the safeguards the Act requires.
- You have the right to access your data, correct it, ask us to delete it, restrict or object to certain processing, and withdraw consent where processing relies on consent.
- If you have a concern we cannot resolve, you may complain to the Nigeria Data Protection Commission.
Our data protection contact is Dr Onome Braimah, onome@syndicate.bio.
10. Consent for testing
When you give consent for testing on the ordering page, you confirm that you have read and understood this document, that your questions have been answered, and that you agree to the test being carried out on your sample. This consent is the basis on which we perform your test, and you can withdraw it at any time before the test is run.
11. Use of your anonymized data for research
Unless you opt out, data derived from your sample may be used for research that aims to improve understanding of health and disease, including research focused on African populations. Before this use, the data is anonymized, meaning identifiers are irreversibly removed so that it no longer identifies you. We carry out this research use under public-interest scientific research, a lawful basis recognised by the Nigeria Data Protection Act 2023, with safeguards including anonymization. Any research that would use data still linked to your identity would be done only with your separate, explicit consent. You can opt out at any time by unticking the option on the order form or by contacting us, and we will not include your data in research going forward. Opting out does not affect your test or the service you receive. Data already anonymized and shared cannot be traced back and withdrawn.
12. Being recontacted about clinical studies
Unless you opt out, we may contact you about future clinical studies you might be eligible for. You can opt out at any time by unticking the option on the order form or by contacting us. Agreeing to be contacted does not oblige you to take part in any study.
13. Costs, refunds, and cancellation
The price of the test you selected is shown on the ordering page and is payable through the secure payment link we send you. Once your sample has been received and processing has begun, the fee is non-refundable.
14. Voluntary participation and withdrawal
Ordering a test is voluntary. You may withdraw your consent at any time by contacting us. Withdrawal does not affect processing already carried out before you withdrew, and cannot reverse the use of data that has already been anonymized and shared for research.
15. Children and people who cannot consent for themselves
Where a test is for a child under 18 or for a person who cannot consent for themselves, consent must be given by a parent or legal guardian, who confirms the information in this document on that person's behalf.
16. Changes to this document
We may update this document. The version and date at the top show the current one, and the version that applied when you ordered governs your test.
17. Questions and complaints
If you have questions about the test or this consent, contact us at +234 813 681 9917 or info@syndicate.bio before you proceed. Complaints can be sent to Dr Onome Braimah, onome@syndicate.bio.