Genomics is the study of our genes - the DNA contained in the cells of our body that acts as a blueprint for a human being.
Each of us has a slightly different DNA sequence that sets out who we are, how we work… and even how we can be repaired. Studying our DNA can help us understand an amazing range of health-related characteristics, including:
The famous double-helix structure of our DNA contains a lot of information; there may only be four building blocks in the structure (A, C, G and T) but every strand of our DNA contains 3.2 billion of these letters.
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.
Genuity Science is a global privately-funded life sciences company, headquartered in the US, which carries out important research on the human genome to examine the relationship between genetics, health and disease. Genuity Science (Ireland) Limited is its Dublin-based company.
Genuity Science conducts research studies by working closely with clinics, universities and commercial partners. To enable this research, Genuity Science is building a database of genomic and health related data that will be used, on a strictly controlled basis, by Genuity Science and appropriately authorised commercial partners and academic research groups.
Genuity Science is undertaking multiple research studies looking at how changes in our DNA might influence the development, progression and treatment of disease. Working with patients, advocacy groups, clinicians, academic researchers and global biotech and pharmaceutical companies, Genuity Science hopes to gain insights that can be used to develop new treatments and diagnostics for a broad range of conditions.
In order to identify the specific genomic factors that contribute to the development, progression and treatment of a condition, we are developing a database (much like a library) of genomic information that will enable us to compare the genome of those with a particular condition to the genome of those without that condition.
Participation in a Genuity Science study will not benefit you directly. You will not receive any financial benefit, results or feedback from the study. This includes results related and unrelated to your condition, either generally or personally. However, information obtained from the study may help us to better understand your condition and to improve diagnosis and treatments in the future.
If you decide to participate and consent to one of our studies, you will be asked to:
You may withdraw your consent during the course of the study.
The participant’s medical, lifestyle, and genomic data will be studied together with that of other participants and analysed to try and identify factors that contribute to disease.
The participant’s information will also be used in other health-related analyses that are undertaken by Genuity Science, as a comparison with other conditions and to help us understand normal biological changes that may be associated with health.
Once transferred to Genuity Science, access to your coded data and samples is tightly controlled as follows:
We have a robust level of technical and organisational measures in place to protect your data from unlawful or unauthorised destruction, loss, change, disclosure or access. We ensure that all personal data controlled by us is stored securely in the EEA (European Economic Area) using the highest level of security measures.
Genuity Science controls all access to the Genuity Science database where your coded data is stored. Genuity Science’s researchers, Genuity Science’s commercial partners (such as pharmaceutical or biotech companies) and authorised research partners can access your coded data for commercial and academic research projects.
Other than Genuity Science, only our commercial partners and authorized research groups can access the study data as follows:
Genuity Science does not provide access to the blood sample you donate or to any biological materials derived (DNA) from that blood samples. Occasionally small amounts of the biological sample may be sent to external, appropriately certified laboratories in the European Economic Area, to process the sample for specialised services or in the event of capacity issues at Genuity’s laboratory in Dublin.
Genuity Science will retain your biological samples for ten (10) years after the study starts at this clinic. If a longer time period is required for the continuation of the study, for example if Genuity Science makes a discovery that requires further investigation, but the approved study period has expired, any request for extension, and the associated period of time, will be subject to approval by the relevant Research Ethics Committee.
Genuity Science periodically reviews the necessity to retain all the data it collects and processes. Genuity Science will keep your coded data for the duration of the scientific research being carried out by Genuity Science and its commercial and other research partners. Any data that is no longer being used for the purposes outlined in the Participant Information Leaflet will be deleted.
Your participation is entirely voluntary. If you elect not to participate, it will not compromise your standard of care in any way. Those who do choose to participate can elect to withdraw from the study later, with no reason and no permission from a doctor being required.
As the information or data that Genuity Science collects for its studies relates to your health, it is known as “personal sensitive data” under Irish Data Protection Laws. In accordance with Irish Data Protection Laws, your explicit consent is the lawful basis on which Genuity Science will process your personal data in the first instance.
In the event that you exercise your right to withdraw your consent from a study, Genuity Science may need to continue to process your data on the basis of the legitimate interests of Genuity Science (and its commercial and academic research partners) in the pursuit of scientific research, as deletion of your data would seriously impair the purpose of the research.
You can withdraw from a Genuity Science study at any time. You will need to contact the clinic where you signed up to the study to exercise your right to withdraw, as Genuity Science does not know your identity and cannot correlate your name with the Coded Data which Genuity Science holds. However, please be aware that the timing of withdrawal from a Genuity Science study, and whether or not your data has been included in a “data freeze”, will affect whether or not Genuity Science needs to continue to process your data.
A “data freeze” means that all the data collected up to a certain point in time is effectively “frozen” to create a fixed point of reference for our research. Each time Genuity Science carries out a new data freeze, the previous one is archived.
In the event of any request by you to withdraw your consent, your Informed Consent Form will be retained at the clinic for legal, regulatory and audit purposes.
Withdrawal before your data has been included in a data freeze:
Withdrawal after your data has been included in a data freeze:
Genuity Science works with commercial partners to carry out health related research, these commercial partners include pharmaceutical and biotech companies who develop new diagnostic tests, identify new risk factors or drug targets, and develop, test and market new drugs. Our collaboration with commercial partners increases the potential of a novel biological finding arising from this research and will be key in accelerating the translation of a novel discovery into the drug development pathway where they may result in a potential new therapy.
For more details on our current commercial partners, please click here.
Genuity Science does not allow access to any personal data for marketing or insurance purposes.