At Nebula Genomics (“Nebula”), we believe that genetic research is crucial to our deeper and better understanding of the human genome and we aim to continue to conduct genetic research in meaningful ways. This document explains how we engage in research and how and when we may ask for your consent to use your data for research. Rest assured, we will never share data that can personally identify you without your consent. And you may always freely revoke your consent without any impact on your access to your genetic information and our services. Please carefully review this document as it contains important information about our research and privacy efforts. All capitalized terms have the meanings set forth in our Privacy Policy.
Summary
At Nebula, we believe that research is an integral part of our mission to make the human genome more accessible. At the same time, we value and respect the privacy of our users and strive to provide you with control over your data. Consistent with the applicable laws, we only use data that can personally identify you for research if you give us your affirmative consent. When we present you with a research opportunity and ask for your participation, we will also provide you with specific information about the research including information about any third party we are partnering with, what data will be used in the research, and whether any data will be shared with third parties for the research purposes. If we do share any data with third parties, they will be only allowed to use it for the research purposes and will return or delete all data after the research purpose is achieved. If you decide to participate in research, you can always change your mind and opt-out within your account settings. If you do so, we will stop using your data in the future research you are opting out of.
Pursuant to our Privacy Policy, we might use de-identified data, including genetic or phenotypic information, for research purposes without any additional consent or authorization, but this data is not personally identifiable. We will never share data that can personally identify you without your consent.
Affirmative Consent
By clicking “I Agree to Participate In Research,” I am agreeing to be placed in the Research Pool and I authorize Nebula to contact me with future research opportunities. By agreeing to be in the Research Pool, you are not agreeing to have any of your data shared or used for research, only to be contact about future research opportunities.
Nebula Research Endeavors
N/A
Sometimes we may partner with third parties to conduct research. Those third parties include non-profit organizations, pharmaceutical companies, and academic institutions. 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. When we chose a third party research partner, they are contractually obligated to keep all the data used for research confidential, and are only allowed to use this data for the purposes of that research. Once the research is complete, the third parties must delete and/or return all data and they no longer have access to it.
Data Used in Research
Each research opportunity is unique and may require different sets of data. We collect various types of data from and about our users (see our Privacy Policy for details and definitions). Some research will only require Genetic Data. Other research may also require your Survey or User Data. All of this data is considered “Personal Information.”
If you have decided to store your biological sample used to extract your Genetic Data, we will not use this data for any other purpose without your affirmative consent. Likewise, we will not share your biological sample with any third party without your affirmative consent.
Some research may require de-identified data. De-identified data is data that has been edited so that it cannot be used to infer information about, or otherwise be linked to, a particular individual, and we take additional steps to ensure the data is not re-identified or otherwise linked to any one individual. In other words, this is data that is obtained from your Personal Information, but that does not identify you. We may use such de-identified data for research purposes without your consent, as allowed under the applicable law.
Participating in Nebula Research
This form indicates to us that you are agreeing to be in the pool of potential research participants, but it does not give us permission to use or share your data for research. Instead, whenever we have a research opportunity, we will contact all of the users who have agreed to this form (“Research Pool”) and will provide additional details about the research and ask for your consent (“Individual Research Notice”). When we announce a research opportunity to the Research Pool, we will explain the type of data to be used and whether we are sharing this data with any third party and you will have the option to opt-in to participating in the research. If you chose to participate in the specific research (“Research Participant”), you are giving Nebula consent to use the types of data specified in the Individual Research Notice, including sharing your data with third parties that we partner with for the purpose of that research. You can always change your mind later and opt-out of any research, as described below.
Depending on the research opportunity, we may or may not provide you with compensation for your time. For some longer or more involved research activities, cash equivalents, or charitable donations may be provided as compensation. There is no cost to you to take part in this research.
Sometimes research discoveries lead to products or inventions that have value if they are made or sold. In situations where your information contributed to an invention or product that results in a profit to Nebula or any of its research collaborators, unless otherwise provided in the Individual Research Notice, you will not receive any financial benefits from your participation in any research opportunity.
Revoking Your Consent
You can always revoke your research consent. If you consent to this Research Consent Form, and participate in the Research Pool, your data will not be used or shared for research unless you also consent to individual research. You can always revoke your Research Consent and opt-out of the Research Pool within your Account.
To revoke your consent for the Research Pool, please follow the below instructions:
Email info@nebula.org.
If you decide to participate in individual research, you can also always revoke your consent. When you consent to participate in research and later decide to revoke your consent, we will honor your decision to opt out in the future and we will stop using and/or sharing your data for that research purposes within 30 days of receiving your revocation. Please note, however, that we may not be able to delete or otherwise purge your data from the research once it has been processed, used, or studied. Even if we are unable to purge your data from the research, we will ensure that it is not used again for that research purpose.
To revoke your consent for the individual research, please follow the below instructions:
Email info@nebula.org.
Benefits and Risks of Participation in Research Opportunities
We believe that research is integral to the services we provide and will help us improve our understanding of the human genome and provide better and more accurate genetic data and report to you. As our research and understating of the human genome deepens over time, you will be benefited by obtaining better and more accurate reports about your genetic data, ancestry, and health. However, you will not receive any immediate and direct benefits in return for your participation in the research. Unless otherwise noted in the Individual Research Notice, you will not be compensated financial or otherwise in exchange for participating in any specific research opportunities, or generally in the Research Pool. Your participation is completely voluntary.
Indirectly, you, and everyone else may benefit from your participation in our research opportunities. Research often helps us discover more about the human genome and gives us additional insight into the genetic data that we provide to you. Some research may be also be geared toward discovery of ancestry data and will result in more accurate ancestry information provided to our customers. Some research is focused on discovering lifesaving medication or curing disease. Research opportunities may result in academic and other publications that continue to the general body of knowledge about genetics. These contributions are invaluable and are one of the motivations driving the progress at Nebula.
We take many precautions to minimize any risks to you as a result of participating in any research opportunity. We employ strict security standards, such as physical, technical, and administrative access controls to prevent unauthorized data use. We also employ industry standard best practices in an effort to protect and safe keep your data. However, as with data, we cannot guarantee 100% security. Despite our best efforts in selecting research partners and service providers, your data, including genetic data will be used, processed, and possibly shared with third parties, as part of the research.
There may be additional risks to participation that are currently unforeseeable.
Contacting Nebula About Research Questions
We are passionate about our research endeavors and are always available to answer any questions you might have about this form, or any other specific research opportunity. If you have any research questions, please contact us by sending us an email with the subject “Research Participant Inquiry” to info@nebula.org. We will do our best to respond to your inquiry within five business days.