Dame Hillary Cass and her team attempted to acquire the complete patient records of trans people in England. Some members of the team are vocal promoters of conversion practices. Their efforts were thwarted as GICs declined to participate. Cass recommended in her final report that these research programmes continue, extending beyond the timeframe and scope of the Cass review. It has been reported that the GICs intended to comply with this recommendation. At the moment, Cass has requested data for the 18-30 age group only, but this could change in the future.
The University of York and NHS England have obtained various authorisations from the Health Research Authority and the Health minister, meaning patient opt-in is not required for their studies. According to some analyses of the research protocol (shockingly, approved by the HRA), despite the team’s assertion, patient data will not be meaningfully anonymised or pseudonymised.
In recent years, the NHS in England has become increasingly centralised; however, NHS trusts and foundation trusts remain independent public bodies. You have control over the extent to which data is shared between these NHS bodies.
If you are a GIC patient under 30 and are concerned about the way your data may be being handled, you can contact your GIC by email or letter and exercise your right to object under data protection law.
For former Tavistock GIDS patients and parents, you should send the letter to the Tavistock and Portman NHS Foundation Trust, as well as to the new care provider that has taken over your (or your child’s) care and previously contacted you.
<aside> 💡 Never put your personal data in the subject of an email. Keep it generic.
</aside>
Subject: Data protection - right to object
Dear [the name of the GIC, or the NHS trust],
Data protection - right to object
I wish to exercise my right under data protection law to object to the processing of my personal data for scientific, public health or historical research, or statistical purposes.
I also object to any disclosure of my personal data to a third party (within or beyond the NHS England umbrella) for the aforementioned purposes; my data is to be used within the trust, the foundation trust, or the clinic (whichever applicable) only.
I also object to any processing of my personal data under the circumstances set out in the Schedule to the Health Service (Control of Patient Information) Regulations 2002, particularly in relation to research.
Please let me know if you have already disclosed my personal data to a third party for the aforementioned purposes.