What is Genomics?
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.
Technological advances mean we can now decode a person’s genome in days, compared to the 13 years it took to complete the first ever genomic map. This has made genomic research a viable and revolutionary new front in the pursuit of improved human health.
Who Is Genuity Science?
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 division.
Genuity Science (Ireland) Limited, formerly known as Genomics Medicine Ireland (GMI), was founded in Dublin in 2015 and in 2018 was acquired by WuXi NextCODE, headquartered in Boston.
Following a global corporate re-organisation, the companies began operating under the new and unified Genuity Science brand in Summer 2020, reflecting our efforts to improve offerings and services to customers globally and to grow and scale our operations for the greater benefit of all. Learn more
What is Genuity Science's research about?
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.
Why take part?
In order to identify the specific genetic factors that contribute to the development, progression and treatment of a condition, we need to develop 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.
If you have a couple of hours and 20ml (less than two tablespoons) of blood you would be willing to donate, we’d love to hear from you.
Will this research be of direct benefit to participants?
Perhaps, but if so, then only indirectly. Genomics studies take time and our goal is to facilitate research rather than treating specific participants, so you should not expect any direct benefit from volunteering to participate. However, your participation will increase our understanding of the relationship between people’s genomic make-up and disease and may lead to improved treatments over a period of years.
What's involved if you elect to take part?
If you decide to volunteer and consent to one of our studies, you will be asked to:
You may withdraw your consent during the course of the study.
How is your privacy protected?
How will a research study participant's data be studied?
The participant’s medical, lifestyle, and biological information will be studied together with that of other participants and analyzed by the research team to try and identify factors that contribute to disease.
The participant’s information may also be used in order to:
Who will have access to the data generated for these research studies?
Once transferred to Genuity Science, access to your coded data and samples is tightly controlled as follows:
Data in the Genuity Science database
We have a robust level of technical and organisational measures in place to protect your data from unlawful or unauthorised destruction, loss, change, disclosure, acquisition or access. We ensure that all personal data controlled by us is stored securely in the European Union using the highest level of security measures.
Only your doctor, their research team or the Genuity Science study personnel at the research study site has access to your traditional identifiable data such as your name and date of birth. They keep that information so they can facilitate a request to withdraw from the study. This traditional identifiable data never leaves the research study site. Genuity Science study monitors liaise with your doctor and the research team at the research study site to check that the study is being carried out correctly, adhering to the research institution’s approved ethics terms and ensuring the appropriate consent is in place.
At Genuity Science, we never receive any personal identifiable data such as your name, date of birth or address. All your data in the Genuity Science Clinical Omics Database is de-identified and coded.
Genuity Science controls all access to the Genuity Science database where your coded 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 database as follows:
Genuity Science does not provide access to your biological materials to any third parties except for small amounts of the biological sample that may be sent to external, appropriately certified laboratories for analysis, to generate the data required as part of this research study.
How long will biological samples be kept?
Genuity Science will destroy your biological samples ten (10) years after the study starts at the study site. 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 Ethics Committee.
How long will data be kept?
As science advances, Genuity Science will continue to analyze the coded data in our database for many years to come. For this reason, your medical, lifestyle and biological data generated as part of the study will be retained for the duration of the scientific research, in accordance with EU Data Protection Laws. This data will only be processed for the purposes outlined in the patient information leaflet you receive at the study site. It will not contain any information that traditionally would be used to identify you (such as your name or date of birth).
What if you decide you don’t want to take part?
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 or consultant being required.
If you decide to withdraw, what happens to your blood sample and your data?
If you wish to withdraw from a Genuity Science study and your biological sample has not been converted into data, we will destroy your biological sample and delete your medical and lifestyle data.
If you wish to withdraw from a Genuity Science study and your biological sample has been converted into data and included in Genuity Science’s database, then it will be necessary for Genuity Science to retain your coded data in our database and continue to process and analyze it in order to achieve the scientific purpose of the research. Your data cannot be withdrawn from published results or findings.
Genuity Science will ensure that the code that links your coded data to your name is destroyed, so that it will no longer be possible to link your coded data held by Genuity Science back to your details held at the study site.
Genuity Science will also destroy any remaining biological sample so it can no longer be used.
Where Genuity Science continues to process your coded data, we ensure that high levels of security measures continue to remain in place at all times to protect all data in the Genuity Science database.
Where will Genuity samples be sequenced?
Can a third party use legal process to gain access to the Genuity database?