At Nebula Genomics (Nebula), we believe that research is an integral part to the development of DNA Sequencing technology that has enabled personal genomics. We collaborate with researchers such as [non-profit organizations, academic institutions or pharmaceutical companies] outside of Nebula as they help us to combine our expertise and resources to answer bigger and more complex questions and expand the breadth of genetic research.
At Nebula we value and respect your data protection rights. To that end and consistent with the General Data Protection Regulation (EU) 2016/679 (GDPR) and the UK GDPR, we will only use your personal data, including your genetic data, for research purposes if you give us your informed and explicit consent.
This form contains information that will help you decide whether you would like to participate in research and share your personal data with Research Partners (defined below) outside of Nebula. For more information about how we handle your personal data please refer to our Privacy Policy. For other terms that are not covered by this consent form such as the use of our website, please see our Terms and Conditions. All capitalized terms have the meanings set forth in our Privacy Policy
Please take time to read this entire form and ask questions before making your decision to participate.
Your Consent
By giving consent to participate in our research projects, you agree that your personal data including your Genetic Data and information you provide in response to surveys or otherwise upload to your account or share with us through the use of our websites and services can be used for research as described in and consistent with this form.
Our research projects
As well as doing the research ourselves at Nebula, we also collaborate with researchers from other organizations who share our vision and goals. This might include [non-profit organizations, academic institutions or pharmaceutical companies] (Research Partners). We work with our Research Partners to research and study various topics that help to [Nebula to specify examples of research topics, for instance, ‘study genetic factors behind diseases’]. Before we partner with any third party, our research committee thoroughly investigates and vets potential partners to ensure that we are confident in and comfortable with working with that third party.
Our Research Partners sign agreements with us that specify and limit how they can use your data. We require our Research Partners to have strict privacy and data security measures which are checked by us before we release any data to them. Nebula may receive compensation from Research Partners who work on our research projects. If you have concerns about this or would like more information, please contact us.
We do not share your genetic data for marketing purposes with our Research Partners.
For more information on our research projects please click here and to find out more about our Research Partners here.
Personal data categories
When you give your consent to our use of your personal data for research, Nebula and our Research Partners may use all data that you provide to us when you use our services. This includes:
- Your User Data: this is the information included in your profile such as your name, email address, mailing address, phone number as well as other data collected from your interactions with us, such as order history, payment information, and communication preferences.
- Your Genetic Data: this is the data that we collect from you to provide our services and may include a sample of your DNA.
- Your Survey Data: this is the information you voluntarily provide to us such as your sex, age, ethnicity, weight and height. It may also include behavioural and social information such as a your occupation, commute, diet, alcohol consumption or tobacco use, fitness and exercise and sleep behaviour. Some survey data may collect more detailed information about your present or past physical or mental health, medical conditions, diseases and symptoms and other medical information.
Use of your personal data
If you decide to participate in our research, Nebula and our Research Partners may use your personal data, including your Genetic Data for:
- Research; and
- Publication of research results in scientific or medical publications.
We only share research results which do not identify you by name, email, address or other information that identifies you directly. Research results are only based on de-identified, pseudonymized or aggregated data. In some cases research results may be based on anonymous data, which means no personal data has been used.
Protection of your personal data
As described in our Privacy Policy we maintain a comprehensive information security program designed to protect your personal data and have physical, technical, and administrative measures in place designed to protect against inappropriate access, loss, or misuse of your personal data.
We regularly review and improve our privacy and security practices to help ensure the safety of your personal data. Our privacy and security practices include:
- Research only on your de-identified, pseudonymized and/or aggregated data;
- Training our staff on how to conduct research responsibly and in line with the applicable privacy and security standards.
We only conduct research with your personal data that has been de-identified, pseudonymized or aggregated.
Access to your personal data
There are a limited number of individuals who will have access to your personal data.
Within Nebula:
- Nebula researchers who conduct analyses will have access to your personal data.
Outside of Nebula:
- Our Research Partners with whom we may share your personal data.
Benefits and risks of participating in our research
You will not receive any immediate and direct benefits in return for your participation in the research. Unless otherwise agreed, you will not be compensated financial or otherwise in exchange for participating in our research.
Indirectly, you, and everyone else may benefit through your participation in other ways. Research often helps us discover more about the human genome and gives us additional insight into the genetic data we provide to you. Research opportunities may result in academic and other publications that contribute to the general body of knowledge about genetics. These contributions are invaluable and are one of the motivations driving the progress at Nebula.
There are also some risks in participating in our research. Whilst we ensure that best practices are employed to protect your personal data, sharing data always carries the risk of a security breach that could lead to the unauthorised access or disclosure of your personal data. There is also a remote chance that you could be re-identified from any research publications if a third party finds out that you have participated in a particular study and is able to match your Genetic Data to the research publication.
There may be additional risks to participation that are currently unforeseeable.
Revoking your consent
Participation in our research is voluntary. Participants may change their minds at any time. There is no negative impact for the withdrawal of your consent. Withdrawal of your consent will not affect the products or services you receive. If you withdraw your consent, we will stop using your data within 30 days of receiving your withdrawal and we will not use your data in future research.
Information collected up to your withdrawal may still be used and any personal data that has been shared prior to your withdrawal cannot be reversed.
We may terminate any research projects at any time without notice to you.
To withdraw your consent, please follow our instructions below:
support@nebula.org
Your rights
In accordance with the GDPR, you may have the right to seek access to, rectification of, or object to use of your personal data. You may also lodge a complaint about our handling of your personal data with your local data protection authority. For more information about your rights, please refer to our Privacy Policy.
Further questions and contact information
If you have any concerns, complaints, or questions about any of our practices or about what it means to be in a research study please contact us at:
Email: support@nebula.org
Address: 711 Stewart Ave, Garden City, NY 11530.
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