Consent

Gaining consent for testing is an important consideration for genomic testing, as the results of testing can have a life changing impact not only for those undergoing testing but also their families.

Prior to testing, Informed Genomics Limited (IGL) will require consent to ensure that those undergoing testing have been provided sufficient information required to make an informed choice whether the test is right for them.

Delivery of pre-test counselling can be delivered either

Directly by the health centre

Or

By IGL pre-test counselling video

Written or electronic consent will be taken following delivery of pre-test counselling.

Types of consent requested by IGL include the following:

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For testing of genetic material

It is important that the testing process, the test limitations and the impact of the result are understood. No sample processing or testing is possible without this consent.

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For storage of DNA/RNA etc

It is routine practice to store material such as DNA for a period after testing. Material may be required for future tests or for family studies. Stored the material is not used for any other purposes unless permission has been granted.

This is optional and does not impact on testing taking place. Material will be stored for a minimum period and then discarded if consent for storage not agreed.

Refer to the IGL storage guidance here for the length of time IGL will retain material.

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For stored DNA to be used for family studies

As testing can impact on family members, consent to use DNA as a control in future family studies is sought.

This is optional and does not impact on testing taking place.

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For stored DNA to be used anonymously for internal quality control/service improvements

IGL asks for consent to be able to use stored material. This material is only used by IGL for a limit number of internal processes which are ongoing quality improvements, monitoring of test performance and service improvements.

This is optional and does not impact on testing taking place

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For personal and genomic data to be stored

Consent is required for data storage. The testing process generates genomic data which will be stored by the laboratory. All data will be kept securely by the laboratory and will not be transferred to any 3rd party without permission.

Please see our data storage policy here and our privacy policy here.