Segterra (InsideTracker) DNA Research Consent Document
DNA Research Consent
Last updated: October 29, 2018
InsideTracker aims to make and support scientific discoveries and publish those discoveries in scientific journals. We invite you to participate in our research. To get started you must agree to the terms in this DNA research consent document. Here are key points of the document:
How do I take part in research by InsideTracker?
- Enter information about yourself into the InsideTracker website.
Which of my personal information is used for research?
- Your name and contact information may be used to communicate with you but are not analyzed in combination with your genetic and other personal information.
Who gets to see my personal information?
- InsideTracker's privacy statement outlines who does and does not get access to the personal information of InsideTracker customers; here we list the additional individuals who will get access if you consent to take part in DNA research
- Within InsideTracker: InsideTracker researchers who conduct analyses will have access to your genetic and other personal information, but not to your name, contact, or credit card information. InsideTracker researchers who contact you will have access to names and contact information, but only to very limited genetic or other personal information.
- Outside of InsideTracker: InsideTracker may share some data with external research partners and in scientific publications. These data will be summarized across enough customers to minimize the chance that your personal information will be exposed. InsideTracker may need to share the information with other agencies as required by law.
How will I benefit from this research?
- You may learn about InsideTracker's research findings, including how your answers compare with those of others and new discoveries made by InsideTracker's research program.
- Sometime in the future you or your family may benefit indirectly from research discoveries made by InsideTracker or its research partners.
What are the risks of taking part in this research?
- There is a very small chance that someone with access to the research data or results could expose personal information about you. InsideTracker has policies and practices in place to minimize the chance of such an event.
Can I stop taking part in research by InsideTracker?
- Yes, you can withdraw from research by InsideTracker at any time. Any of your data that have already been entered into a study cannot be withdrawn, but your data will not be included in studies that start after you withdraw your consent.
Full DNA Research Consent Document
One of InsideTracker's missions is to make and support meaningful scientific discoveries by enabling its customers to participate directly in research. InsideTracker has already used aggregated and de-identified user blood data in research studies, and we plan to expand our research with aggregated and de-identified genetics data.
InsideTracker seeks your voluntary participation in our research.
This document explains:
- What you are agreeing to if you consent
- How you can participate
- How your data will be used
- How we protect your data and keep it private
- The benefits and risks of participation
- Your options and how to withdraw
- Who to contact if you have questions
1. What am I agreeing to if I consent?
Giving your consent means that you agree to let InsideTracker researchers use your Genetic& Self-Reported Information for research by InsideTracker, as described above. "Genetic & Self-Reported Information" refers to:
- Your genetic data
- Information you enter into surveys, forms and other features labeled with the InsideTracker logo
- Data you authorize us to import for research
- Your age and ethnicity
Self-Reported Information includes any information you submitted prior to giving consent. Your Genetic & Self-Reported Information does not include identifying Registration Information you provided when you purchased the InsideTracker service or created an account (such as name, address, email address, user ID, password, or credit card information)
2. How do I participate?
Participation consists of (1) allowing InsideTracker researchers to use your Genetic & Self-Reported Information for InsideTracker Research, and (2) entering data about yourself into InsideTracker features on the InsideTracker website. These features may include surveys, individual questions, and other features where you enter information. If you do not feel comfortable providing a piece of information, you may choose not to do so.
InsideTracker research is open-ended: new surveys and features may be added at any time. If new surveys or features are added, you may receive an email update or see an announcement when you sign in to your account. We might invite you to participate in a specific study if your Genetic & Self-Reported Information matches the area of interest.
Your participation in InsideTracker research is completely voluntary.
3. How will my data be used in InsideTracker research?
Your Genetic & Self-Reported Information may be used to discover links between genetic markers, non-genetic markers, traits, diseases, behaviors and other characteristics. Discoveries made as a result of this research could be used to understand the basic causes of disease, develop drugs or other treatments and/or preventive measures, or predict a person's risk of disease. The topics to be studied span a wide range of traits and conditions, from common to rare. The topics include simple traits such as caffeine consumption, serious diseases such as Parkinson's disease or diabetes, and less serious conditions such as migraine headaches or response to over-the-counter drugs. Some of these studies may be sponsored by or conducted on behalf of third parties, such as non-profit foundations, academic institutions or pharmaceutical companies.
4. How do you keep my data protected and private (whether or not I consent)?
If you agree to this DNA Research Consent Document, InsideTracker can use your information in additional ways. Specifically, InsideTracker researchers can use your data for research that will be published in scientific journals, or that is sponsored by the National Institutes of Health and certain other organizations.
Just as InsideTracker aims to minimize the chances of a privacy breach while conducting its business, InsideTracker researchers aim to minimize the chances of a privacy breach while conducting research. Here are the main ways we do that:
- The InsideTracker researchers who conduct the statistical analyses do not have access to Registration Information (name, address, email address, user ID, password, or credit card) of customers
- InsideTracker researchers who interact with research participants and conduct interviews have access to names and contact information of participants, but only to very limited genetic and other personal information
- To minimize the chance that an external person can determine that any particular customer is part of a study, InsideTracker researchers publish only data pooled across multiple customers.
- All InsideTracker researchers are trained on how to conduct research responsibly
If necessary for an audit or evaluation of a federally funded project or for information that must be disclosed in order to meet the requirements of NIH or the Institutional Review Board (IRB), the NIH and an Institutional Review Board (IRB) have the right to audit this study's data, including information that identifies you.
5. What are the benefits and risks of participation?
One of InsideTracker's missions is to make meaningful scientific contributions by enabling its customers to participate directly in genetic research. If InsideTracker publishes study results in peer-reviewed journals, there may be an indirect benefit to you as scientific knowledge increases and/or new drugs or tests are developed.
You may also have the opportunity to acquire one or more of the following, in return for some level of participation in the research:
- Comparison of your personal survey responses to those of all responders, additional information about genetics, genetic research or the InsideTracker study, and/or preliminary research findings
- There may be additional benefits to participation that are currently unforeseeable.
Based on the results of this study, InsideTracker may develop intellectual property, including but not limited to patents, copyrights and trademarks, and/or InsideTracker may commercialize products or services, directly or indirectly. In such cases you will not receive any compensation.
There are some potential risks to participating in InsideTracker research, as described below.
- Some survey questions or data comparisons may make you uncomfortable
- Your genetic data, survey responses, and/or personally identifying information may be stolen in the event of a security breach. In the event of such a breach, if your data are associated with your identity, they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage. In addition, if you or a family member has genetic data linked to your name or your family member's name in a public database, someone who has access to your InsideTracker genetic data might be able to link that data to your name or your family member's name through the publicly available genetic data. Although InsideTracker cannot provide a 100% guarantee that your data will be safe, InsideTracker has strong policies and procedures in place to minimize the possibility of a breach.
- When InsideTracker researchers publish results from this ongoing study, they may include your Genetic & Self-Reported Information but only as part of a de-identified summary across enough people to minimize the chance that your personal information will be exposed. Identification of your individual-level data from those summaries would be extremely difficult, but it is possible that a third party that has obtained some of your genetic data could compare that partial data to the published results and infer some of your other personal information.
- As with any online service, if you disclose your account password to others, they may be able to access your account and your Genetic & Self-Reported Information.
- There may be additional risks to participation that are currently unforeseeable.
None of the surveys or other procedures used by the researchers in the InsideTracker study is invasive or experimental. The procedures involved do not involve more than the minimal risks described above.
6. Do I have any alternatives? Can I withdraw from this study?
At any time, you may choose to change your consent status to either take part in InsideTracker research or to withdraw all or some of your Genetic & Self-Reported Information from InsideTracker research. If you wish to change your consent status, contact us at @. If you withdraw all or some of your Genetic & Self-Reported Information, InsideTracker will prevent that information from being used in new InsideTracker research after you withdraw your consent). Any research on your data that has been performed or published prior to this date will not be reversed, undone, or withdrawn.
Choosing not to give consent or withdrawing from InsideTracker research will not affect your access to your InsideTracker account or your information.
You may also discontinue participation by closing your InsideTracker account, as described in the Product Consent. Requests for account closure must be sent to firstname.lastname@example.org.
- Termination of service. InsideTracker may terminate your access to your account for any of the reasons described in the Terms of Service. If your access to your account is terminated for any of these reasons, your participation in the InsideTracker research may also be terminated.
7. Who do I contact if I have questions?
If you have general questions and need help with InsideTracker's service, please contact: InsideTracker Customer Support
If you have any questions or concerns about InsideTracker research, if you suffer a research-related injury, or if you have a question about subjects' rights, please contact the following: