BIOMAP Privacy Notice
This privacy notice is for participants in our Inflammatory Skin Disease research studies in Psoriasis and Atopic Dermatitis run at King’s College London, specifically the BioDIP, BSTOP, Eczema Genetics and PSORTD studies, and how your personal information will be processed, stored, and shared in relation to the BIOMAP research project. This privacy notice is in addition to those in KCL’s privacy notice.
What is BIOMAP?
BIOMAP is a group of clinicians, researchers, patient organisations and industry partners from across Europe. They have come together to establish a European Bioresource of patient samples and clinical data looking at the causes and mechanisms of Atopic Dermatitis and Psoriasis to improve treatments for patients.
How is your data and King’s College London involved?
King’s College London is one of the partners in BIOMAP, we are sharing data from some of our Atopic Dermatitis and Psoriasis research studies with BIOMAP.
What data is being shared?
Information on what we collected about you was provided on the participant information sheet you were given when you joined the study:
Data that is being shared may include:
- Anonymised personal data
- Genetic Data extracted from the blood samples you gave us
- Data concerning your health, such as treatments you are using
- Racial or ethnic origin
We will only ever share information that is necessary for the purposes of the research project, except on rare occasions when we may be required or permitted to share personal information by law (e.g. for law enforcement purposes).
In our anonymisation of your personal data we remove all information that could easily be used to identify you. Despite these measures, there will always be a small residual risk that you could be re-identified from the information that we share; if we were to remove every single piece of information that could be used to re-identify you, then, the resulting data would no longer be helpful for further research into atopic dermatitis and psoriasis.
How is your information shared and processed?
BIOMAP will store your data securely, in a secure environment and in compliance with the strict requirements of the GDPR. Your data will have restricted access, we have control over who has access to your data.
We will only permit BIOMAP partners to access your data when they need the data for a specific aspect of the agreed research and they have agreed (by signing a legally enforceable data sharing agreement), amongst other things, not to share your data with any 3rd parties and not to attempt to reidentify you. In certain circumstances our BIOMAP partners may need to engage 3rd party service providers, but again we will only permit this if legal-binding data security and confidentiality protections are put in place. King's College London will always remain in control of who has access to your data.Anonymised findings from your research data will be written up for publication in academic journals.
What is the legal basis of processing?
King’s College London is an institution and carries out functions that are in the public interest, research is one of these functions. Therefore, the legal basis for us sharing and processing your personal data under GDPR is under task in the public interest.
How long is my personal information being processed?
Processing of your information will take place until the project is completed; it is expected to run until 31/03/2024.
By law, you have certain rights over your personal information as described on our Data Subjects Rights page. Please note, these rights might be restricted in some circumstances. These include compliance with legal obligations. Restrictions might also be applied for research purposes. For example, if the deletion of your data was seriously detrimental to the research. In such circumstances, we may need to keep the information about you that we have already collected.
Will changes be made to this privacy notice?
This privacy notice was last updated in November 2020. We keep our privacy notice under regular review, and we will place any updates on this web page.
How to contact us with questions or concerns
If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer, Mr Albert Chan at firstname.lastname@example.org who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).