Individual level data and case studies

Depending on the level of detail you wish to export there are a couple of routes to get permission to publish individual level data about Genomics England participants.

Option 1: via Airlock

You can raise an Airlock request that includes data at an individual level, and it will be reviewed by the Airlock Team who will work with the Airlock Committee and other subject matter experts in order to assess the re-identification risk of the data.

You should ensure that you clearly justify why the data needs to be at an individual level, the intended purpose, and that any phenotypic description describes at least 5 participants in our dataset.

If your analysis includes any individual description that describes <5 participants within the NGRL, this may be deemed Potentially Identifiable Data (PID) which we would not allow out of the Research Environment via Airlock.

You can check participant counts on Participant Explorer by using the "Search by Clinical Concept" function or through a LabKey query. Providing a supporting document for your export showing the search terms you have used and the resulting counts helps to reduce any delays processing your request.

The limitations in place when exporting individual level data via Airlock are to comply with the agreement participants signed when they donated their data to us. Many participants are willing to further support research by allowing more detailed descriptions/further clinical information to be published; however you will need to gain additional consent from them via the recruiting clinician to do this. Genomics England are keen to foster collaborations between researchers and clinicians and can help to facilitate this through clinical collaboration requests.

Option 2: Clinical Collaboration requests

If you wish to conduct a case study that would involve publishing potentially identifying individual level data, instead of raising an Airlock request, you should raise a Clinical Collaboration Request to contact and involve the recruiting clinician, and gain additional consent from that participant to publish their data.

For PhD and MSc projects

Since small scale studies of small groups or even single families are ideally suited to short-term projects like student projects, we have specific guidelines for these kinds of projects. If you have novel insights, you can make a Clinical Collaboration Request and potentially gain consent to publish your data, although this is not guaranteed.

We will not process any requests where there are no new results, and the request is only for consent to publish. If you do not obtain any novel results or do not receive consent to publish, we recommend redacting any individual-level data from your thesis/dissertation and show the data to your supervisors and examiners within the RE. We can help you to add data to shared folders that will be accessible to others.

Please contact the Airlock Team by sending in a Service Desk ticket including "Airlock" in the subject line if you need help with doing this.