O'live DNA Research and Donor Matching Consent
Consent Document - Key Points
O’live DNA aims to support scientific discoveries that pertain to medical and health-related issues. We invite anyone who wishes to participate in the donor matching and research programs who wishes to do so. In order to be a part of these programs, you must give your full consent to the document below. Here are the key points that are discussed in that document:
How do I take part in the O'live DNA Donor Matching and Research programs?
To take part in these programs, you must upload your DNA data file or use one of the DNA testing kits available through O’live DNA Unfortunately, we will not be able to accept users who do not have this data. This data is processed using our HLA imputation program to create a high-definition analysis of your genome. O’live DNA could match you with a potential genetic donor or someone in need of a donation from this information.
Can my child take part in O'live DNA Research and Donor Matching?
Your child is eligible for O’live DNA Research and Donor Matching if their legal guardian authorizes them. They agree to use their Self Reported Information and Genetic Information for Research or Donor Matching Services.
How is my personal information used for research and matching?
- Your Genetic Information and Self-Reported Information (excluding any personal information) may be used or analyzed for Research or potential Donor Matching upon your consent.
- Your contact information will be used to contact you but will never be used in combination with your Genetic Information or Personal Information during our analysis.
Who can see my personal information?
O’live DNA’s Privacy Statement details who can and cannot access your Personal Information; here is a list of additional individuals who may access your Personal Information if you consent to the Research or Donor Match programs:
- Within O’live DNA: In some cases, researchers who conduct the analysis of your Genetic Information require access to your Personal Information for verification purposes. However, they will not have access to your contact info, name, or credit card info. They will only see a limited amount of Genetic Information protected by our Genomic GPS program (see our Privacy Statement).
- Outside of O’live DNA: O’live DNA may share limited data with our research partners. However, this data will be limited information using Genomic GPS to minimize the chance of your personal information being exposed. Additionally, O’live DNA may need to share certain information if required by law.
Will I benefit from this research or donor matching?
- By taking surveys offered by O’live DNA, you can learn how your answers compare to the general population and what steps you could take to better your health.
- In the future, it is possible that you or someone you are related to could benefit indirectly from the Research or Donor Matching programs.
- The Donor Matching program is entirely optional. Even if you don’t match with someone or don’t need a match currently, you could help or be helped by someone in the future.
Are there any risks in participating in Research or Donor Matching?
O’live DNA makes every effort to minimize risks involved with data sharing; however, there is always a very small chance your data could be accessed. With that in mind, we have policies and practices in place to reduce the possibility of a security breach and keep your information private.
Can I choose to stop participating in Research or the Donor Match programs?
Participation in both programs is entirely optional, and users have a right to withdraw from them at any time. However, any data that was already used in a Research program can not be removed. Once you submit your request to remove from either program, your information will no longer be used. Please allow 2-3 days for complete data deletion.
1. What do I agree to when I consent?
You can agree to consent to O’live DNA Research or Donor Matching by clicking the appropriate box or slider when prompted. Clicking either of these will let O’live DNA researchers use your Self-Reported Information and Genetic Information for the purposes described above. “Self-Reported Information and Genetic Information” refers to:
- Genetic data that you either upload or submit via testing kit.
- Information that you provide on O’live DNA surveys or questionnaires.
- Your ethnicity and age.
Your “Self-Reported Information will also include any information that you provided before giving consent. However, your Self-Reported Information does not include any identifying Registration Information that is necessary to open the account, such as name, address, user ID, email address, credit card information, and password.
2. How can I participate in Research or Donor Matching?
Research Participation consists of (1) allowing O’live DNA researchers to use your Genetic and Self-Reported information for internal Research, and (2) entering data about yourself or your lifestyle Features located on the O’live DNA website. These features may include individual questionnaires or surveys. If you feel uncomfortable answering any question or providing specific information, you do not need to provide an answer. These surveys are entirely optional, and participation is not required to use the O’live DNA websites.
These Research surveys are open-ended, and O’live DNA could add new surveys over time. We may also offer certain Research opportunities if your specific Genetic or Self-Reported information matches an area of interest. You may receive these offers via email or through your O’live DNA account. You are not obligated to participate in any survey.
Donor Matching is another opt-in service that allows our customers to match other users who may require bone marrow or other life-saving transplants. Our method of DNA analysis uses HLA imputation technology which produces a highly accurate analysis of your genome without using blood samples. Our matching service allows us to match potential donors more accurately and at a fraction of typical DNA blood matching costs.
If you opt-in to this service, you will be alerted if you are a potential match with someone in need. Additionally, you will be automatically eligible for the service if you should need a transplant donor in the future. This service will anonymize your Genetic Information and compare it with the anonymized DNA data of those in need. Your Personal Information will never be attached unless you are a potential match. In that case, only your account information will be used and never your name, address, telephone, or credit card information. If you ever wish to withdraw consent for the Donor Matching program, you can do so at any time.
3. How will my information be used?
O’live DNA may use your Self Reported & Genetic Information to identify links between traits, diseases, genetic markers, non-genetic markers, characteristics, and other behaviors. O’live DNA could use discoveries made during this research to find and understand the basic causes of genetic diseases and develop treatments, drugs, preventative measures, or predict a person’s disease risk.
Many traits studied range from simple characteristics such as freckles or hair color and range to more complicated conditions such as diabetes or risk of developing Parkinson’s disease. Research topics might include sensitive topics such as drug use or sexual orientation from time to time. If you are not comfortable with these topics, you are not required to respond.
Additionally, your Genetic and Self Reported information could be used to match you to potential donors using our Donor Match program. This program is entirely optional, and users can still access the full O’live DNA features if they do not opt-in to this service.
4. How will O'live DNA keep my private data safe?
O’live DNA’s Privacy Statement goes into detail about how the company protects your privacy while providing our Services to our customers. O’live DNA uses various technical, physical, legal, and administrative policies and procedures to safeguard your Genetic Data and Personal Information (including any responses to our surveys or questionnaires).
If you agree to this consent document, O’live DNA will be able to use your information in several additional ways. More specifically, O’live DNA researchers will be able to use your anonymized data for Research, Donor Matching, or publishing in scientific journals.
O’live DNA employs multiple safeguards to minimize the chances of a privacy breach for both business and research practices. Here are the ways that we protect our data from breaches:
- The O’live DNA researchers will never have full access to your Registration Information (name, address, user ID, password, or credit card information). They will only have access to anonymized data that can not be connected to any individual.
- To further minimize the chance that any external person could identify and particular customer as part of a study or otherwise, O’live DNA researchers will only ever publish a very limited set of anonymized and non-identifying data.
- O’live DNA employees are trained to handle sensitive data and how to conduct responsible research.
- We employ our proprietary security technology called Genomic GPS. Even in the event of a data breach, the information will be unidentifiable without the Genomic GPS encryption key.
5. What are the risks and benefits of participation in Research or Donor Matching?
In addition to helping our customers live their healthiest lives, O’live DNA also strives to make meaningful scientific and medical contributions. These contributions are possible by allowing our customers to take part in our Research and Donor Matching programs.
There may be an indirect benefit to our users by developing new drugs and tests through research. There may also be a direct benefit to those participating in the Donor Match program, as they could potentially save the lives of those they match with. In addition, if they ever need a donor, they could possibly find one through the matching program. There may be additional, unforeseeable benefits in the future.
There are several minimal risks in being a part of the O’live DNA studies or Donor Matching programs. These risks are:
- Some users might find certain survey questions to be personal and may make them uncomfortable. If this is the case, feel free to skip these questions or exit the survey.
- Your survey responses, Personal Information, or Genetic Information may be taken in the unlikely event of a security breach. O’live DNA has several safeguards in place to prevent this from happening. Still, if a breach were to occur, your Personal Information may be made public or even released to private insurance companies. We employ solid policies and procedures to protect your data and minimize the chances of a breach taking place.
- When O’live DNA researchers publish their findings of a study, the data used may include your Self Reported and Genetic Information. However, this information is only ever used as a part of a summary and will never include any personal or identifying information. Additionally, this data is anonymized using our Genomic GPS encryption technology, and identification on an individual level is challenging.
- As with any website that handles Personal Information, you should not disclose or share your account information or passwords with others. If someone obtains your password, they will have access to your Self-Reported Information and your Genetic Information.
- Participation in O’live DNA Services and Surveys is entirely optional, and there may be certain additional unforeseen risks in the future.
- No survey or data collection method used by O’live DNA researchers is experimental or invasive. All procedures used do not involve any risk other than the minimal risks as stated above.
6. How can I withdraw from a study or Service?
Participation in O’live DNA Research or Donor Matching is entirely optional, and you can withdraw at any time. If you choose not to give consent for your Self Reported Information or Genetic Information to be used, it may still be accessed for other purposes as detailed in our complete Privacy Statement. If you do not wish to consent to a particular study, you will still have access to the O’live DNA Research surveys and other features.
You have the right to change your consent status at any time. You can withdraw consent from O’live DNA Research or Donor Matching, removing your Self Reported and Genetic Information. You can find your consent status in the account “Settings” menu. If you have technical issues at any time, you can reach out to our customer care team at help@oliveDNAcare.com.
If you choose to withdraw portions or all of your Self Reported and Genetic Information, O’live DNA will not allow that information to be used in new Research or Donor Matching. It could take up to 30 days to altogether remove your information from the day you file the request. It is impossible to withdraw or reverse your data from any published or performed studies before the withdrawal date.
By choosing not to allow your consent or withdrawing from a O’live DNA Research or Donor Matching program, you will still have access to your account and all Genetic Information included in our testing Services.
You can also delete your Personal or Genetic Information by contacting help@oliveDNA.com. Please allow up to 30 days for account and information deletion, as outlined by our Terms of Service.
Additionally, O’live DNA Research or Donor Matching may be terminated at any time, without your consent. In these particular cases outlined below, O’live DNA will maintain your Self Reported and Genetic Information according to the terms outlined in our Privacy Statement.
- Transfer of company ownership. If O’live DNA were to undergo a business transition, such as a merger or acquisition, O’live DNA Research and Donor Matching may be terminated. In this case, your information would remain subject to the points described in the pre-existing Privacy Statement.
- Service termination. O’live DNA may terminate access to the Services if any terms described in the Terms of Service are breached. If your access to the Services is terminated, O’live DNA may also terminate your Research or Donor Matching participation.
7. Who can I contact if I have questions?