At Genuity Science, we believe that being entrusted with the genomic data of our research participants and partners is a privilege.
We recognize our responsibility to implement the very highest standards in ethics, trust and security. This responsibility informs everything we do.
Our ongoing commitment is to maintain the security, privacy and quality systems policies and protocols necessary to ensure that all data in our stewardship is comprehensively protected and secured.
All our products and processes are designed with privacy at their core and the Data Privacy Team are integrally involved in each of those design processes.
Each department has a Data Privacy Champion who co-ordinates regularly with our Data Privacy Team to ensure effective data oversight and management.
All our employees are required to undergo regular training on relevant data privacy legislation.
We are globally committed to the safe, responsible and compliant use of all data under our stewardship.
Find out more about the type of data we collect via our website, from our research study participants, and from our customers, and how we protect that data, by reading our Privacy Policy, our Participant Privacy Information Statement and also our Website Terms and Conditions.
Our Cookie Policy will help you understand how our website operates and the options you have when interacting with our website.
Learn more about how we collect and protect data for our research studies and how we share genomic data with our commercial partners and clinical collaborators.
Everything we do when we collect personal data from participants in our research studies is based on the 7 Key Principles of Data Privacy set out in the General Data Protection Regulation (EU 2016/679).
Most importantly, we ensure that the data will only ever be used in line with the original purpose for which it was collected. We make sure that participants understand:
What data we collect and store
When you volunteer to participate in one of our research studies, with your consent the research team will collect the following data:
Only the information required to address the research question will be taken from your medical records.
The data we collect will never include your name, address, date of birth, social security number or other demographic information which identifies you.
During our research studies we will also collect a biological sample from you such as blood or saliva. In some studies, we may also request access to a small portion of a tissue sample which was previously obtained from you. We use techniques such as whole genome sequencing, which reads every letter of your DNA (i.e. your “genomic instructions”), to enable us to read your genomic data from these biological samples.
Why we hold the data and what it will be used for
Genuity Science collects your data in order to try to identify similarities across different diseases in order to maximize discoveries that could lead to drug discoveries and better use of existing drug treatments.
We combine your data with data from thousands of other participants (with similar diseases and without any diseases) in our Clinical Omics Database to study the similarities and differences in the data and how they relate to health. Researchers then look for patterns that may give clues about the causes of health conditions, or patterns that might help us to better understand a condition or find a new way to treat it.
What the legal basis for processing the data is
The information or data that Genuity Science collects for this study is known as “personal sensitive data” under Data Protection Laws as it relates to your health. Under Data Protection Laws, your explicit consent is the lawful basis on which Genuity Science can process your personal data in the first instance.
Once your biological sample has been converted into data, combined with your health and lifestyle data and entered into the Clinical Omics Database, the lawful basis after this point is the legitimate interest of the scientific research being undertaken by Genuity Science (and its commercial partners), as deletion of your data after this point would seriously impair the purpose of the research.
In accordance with the European and Irish data protection laws, we shall only process, store and use your data in a manner that is consistent with the basis on which you joined Genuity Science’s research study as described in the information materials and consent form you receive at the research study site.
How we protect the data
How we share the data with our commercial partners and clinical collaborators
Genuity Science controls all access to the Clinical Omics Database where your data is stored.
Other than Genuity Science, only your doctor and their affiliated institution, and our commercial partners and authorized research groups can access the Genuity Science Clinical Omics Database as follows:
How participants can withdraw from a research study
We also make sure participants are informed about their legal rights as data subjects.
You can find a full copy of our Participant Privacy Statement. If you have any further questions, our FAQs will hopefully give you the answers you are looking for. But if you need any more information, please contact us and we will respond to your query.
We also make sure participants are informed about their legal rights as data subjects.
Find the full copy of our Participant Privacy Statement here. If you have any further questions, our FAQs will hopefully give you the answers you are looking for. But if you need any more information, please contact us and we will respond to your query.
We will always ensure that we have the appropriate legal mechanisms in place when we share genomic data, such as EU Standard Contractual Clauses.
Sharing genomic data with clinical collaborators
With the consent of our research study participants, we provide a copy of their genomic, clinical and lifestyle data with the clinical collaborators at the hospital where the data was collected and its associated university. Our clinical collaborators can use the data for their own research purposes (in line with the original consent given by the participant).
Sharing genomic data with our commercial partners
As part of our global collaboration studies to uncover new drug therapies and treatments, we allow our commercial collaboration partners to access our Clinical Omics Database (where the genomic, clinical and lifestyle data is stored) to explore the data via an access-controlled environment. Our commercial partners can only use the data for research in line with the original consent given by the participant. Our commercial partners can only access our Clinical Omics Database to run their analyses within our platform via Remote Virtual Desktop. When they log in to our system, all database activity is logged and tracked, and their analyses are monitored by us. Our collaboration partners can never download genomic data from our Clinical Omics Database. It is like a “reading library” rather than a “lending library”. The personal data stored on our Clinical Omics Database does not have any identifiers such as names, dates of birth, addresses, social security numbers or codes that would enable anyone accessing the database to associate the data with the identity of an individual study participant.
We will always ensure that we have the appropriate legal mechanisms in place when we share genomic data, such as EU Standard Contractual Clauses.
For more information, please see our Participant Privacy Statement or if you have any questions, please contact us.
The genomic and clinical data under our stewardship deserves the highest level of security.
All genomic and clinical data is stored using an international ISO certified cloud-based storage provider. In particular, all genomic and clinical data collected for our research studies is stored in the EU – find out more. For sequencing and data analysis customers, we have ISO certified cloud-based storage available in the US and in the EU, depending on your preferences.
Find out more information about how we protect genomic and clinical data collected for our research studies.
We maintain a high level of technical and organizational security measures to protect all data from unlawful or unauthorized destruction, loss, change, disclosure, acquisition or access - including pseudonymization of data, encryption, secure data transfer and storage and controlled access.
Storage of genomic and clinical data for our research studies
All genomic and clinical data that we collect for our research studies is stored and managed using an ISO-certified cloud-based storage provider in the EU. Back-ups are stored on a similarly secure infrastructure within the EU. The data centre facilities in the EU on which this data is stored are Tier 3+ and are operated by the recognised world leader in the field and comply with international standards.
How we protect genomic data collected for our research studies
Our quality systems focus on governance, standardisation, continuous improvement and compliance to ensure the highest quality and integrity of data under our stewardship.
We employ a number of quality systems including:
Data Integrity
Deviation Management
Training
Document and Change Control
Audit
We ensure that all our research studies are approved by a research ethics committee before any work begins.
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