LifeDNA Research Consent

One of LifeDNA's missions is to make and support meaningful scientific discoveries by enabling its customers to participate directly in research. LifeDNA has enrolled participants from among its customers in this project, which we call LifeDNA Research. Specifically, LifeDNA Research refers to research aimed at publication in peer-reviewed journals and research funded by the federal government (such as the National Institutes of Health - NIH). The LifeDNA Research study aims to:

  • Discover genetic factors behind diseases and traits
  • Uncover connections among diseases and traits
  • Learn about human migration and population history through genetics
  • Understand the impact of genetic factors on drug reaction and metabolism
  • Understand how people respond to personal genetic information

For further details on LifeDNA's other uses of personal information, see our Privacy Policy.

LifeDNA seeks your voluntary participation in LifeDNA Research.

This document explains:

  1. What you are agreeing to if you consent
  2. How you can participate
  3. How your data will be used
  4. How we protect your data and keep it private
  5. The benefits and risks of participation
  6. Your options and how to withdraw
  7. Who to contact if you have questions

1. What am I agreeing to if I consent?

Giving consent by checking the appropriate button below means that you agree to let LifeDNA researchers use your Genetic & Self-Reported Information for LifeDNA Research, as described above. "Genetic & Self-Reported Information" refers to:

  • Your genetic data
  • Information you enter into surveys, forms and other features labeled with the LifeDNA Research logo
  • Data you authorize us to import for research (if we request health information, we will ask you to review a separate Authorization form)
  • Your age and ethnicity

Self-Reported Information includes any information you submitted prior to giving consent. If you have elected to have your saliva sample stored, we may also use the results of further analysis of your sample in LifeDNA Research. Your Genetic & Self-Reported Information does not include identifying Registration Information you provided when you purchased the Personal Genome 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 LifeDNA researchers to use your Genetic & Self-Reported Information for LifeDNA Research, and (2) entering data about yourself into LifeDNA Research features on the LifeDNA website. These features 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 answer that question. You may choose to take all, some, or none of the surveys.

The LifeDNA Research study is open-ended: new surveys and features may be added on a continuing basis. If new surveys or features are added, we may invite you to complete these activities. We may also invite you to participate in a specific study if your Genetic & Self-Reported Information matches the area of interest. Such invitations will be sent using routine communication methods, such as email, push notifications or announcements when you sign in to your account.

For your participation, monetary, cash equivalents such as gift certificates or discounts on future LifeDNA service purchases, or charitable donations (up to a value of $30 per half hour of expected time) may be provided as compensation for your time.

Your participation in the LifeDNA Research study is completely voluntary.

3. How will my data be used in LifeDNA Research?

Your Genetic & Self-Reported Information may be used to discover links between genetic markers, non-genetic markers, traits, diseases, behaviors and other characteristics; to study human migrations and population history; or to assess how people respond to personal genetic information. 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 hair color or freckles, 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.

This study may cover potentially sensitive topics such as sexual orientation, illicit drug use or other illegal behavior, or HIV/AIDS status. When LifeDNA conducts studies on such sensitive topics, you will be provided additional information to help you decide whether you want to participate in research on these topics.

4. How do you keep my data protected and private (whether or not I consent)?

LifeDNA's Privacy Policy outlines how the company protects your privacy while conducting business, such as providing our services to you. LifeDNA uses a range of physical, technical, and administrative procedures to protect the privacy of your personal information, including your genetic data and your survey responses.

If you agree to this Consent Document, LifeDNA can use your information in additional ways. Specifically, LifeDNA 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 LifeDNA aims to minimize the chances of a privacy breach while conducting its business, LifeDNA researchers aim to minimize the chances of a privacy breach while conducting research. Here are the main ways we do that:

  • The LifeDNA 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
  • LifeDNA 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, LifeDNA researchers either
    • publish only data pooled across multiple customers or
    • publish only very limited, non-identifying information of a single individual
  • All LifeDNA employees are trained on how to work with human research participants. In addition, all LifeDNA researchers are trained on how to conduct research responsibly.

In addition, LifeDNA will obtain a Certificate of Confidentiality from the National Institutes of Health (NIH). In some cases, if an external party demands access to customer data, LifeDNA can exclude from release the data of customers who have consented to research.

The Certificate of Confidentiality cannot be used to resist a demand for information from personnel of the United States Government that is to be used for auditing or evaluation of federally funded projects or for information that must be disclosed in order to meet the requirements of NIH or the Institutional Review Board (IRB). The NIH and IRB have the right to audit this study's data, including information that identifies you.

5. What are the benefits and risks of participation?

Benefits:

One of LifeDNA's missions is to make meaningful scientific contributions by enabling its customers to participate directly in genetic research. If LifeDNA 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 LifeDNA study, and/or preliminary research findings
  • There may be additional benefits to participation that are currently unforeseeable.

Based on the results of this study, LifeDNA may develop intellectual property, including but not limited to patents, copyrights and trademarks, and/or LifeDNA may commercialize products or services, directly or indirectly. In such cases you will not receive any compensation.

Risks:

There are some potential risks to participating in the LifeDNA Research study, as described below.

  • Some survey questions or data comparisons may make you or your family members 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 LifeDNA 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 LifeDNA cannot provide a 100% guarantee that your data will be safe, LifeDNA has strong policies and procedures in place to minimize the possibility of a breach.
  • When LifeDNA researchers publish results from this ongoing study, they may include your Genetic & Self-Reported Information but only as part of a 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 LifeDNA Research 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?

Your alternative is not to participate in the LifeDNA Research study. If you choose not to give consent for LifeDNA Research, your Genetic & Self-Reported Information may still be used for other purposes, as described in our Privacy Policy. If you do give consent to participate in this study, you may choose not to take LifeDNA Research surveys or use other LifeDNA Research features.

At any time, you may choose to change your consent status to either take part in LifeDNA Research or to withdraw all or some of your Genetic & Self-Reported Information from LifeDNA Research. Your consent status can be changed my emailing us at aloha@LifeDNA.com. If you withdraw all or some of your Genetic & Self-Reported Information, LifeDNA will prevent that information from being used in new LifeDNA Research initiated after 30 days from receipt of your request (it may take up to 30 days to withdraw your information 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 LifeDNA Research will not affect your access to your Genetic Information or to the Personal Genome Service.

You may also discontinue participation by closing your Personal Genome Service account, as described in the Terms of Service. Requests for account closure can be made by emailing us at aloha@LifeDNA.com.

In addition, the LifeDNA Research study may be terminated without your consent. In the following cases, LifeDNA will maintain your Genetic & Self-Reported Information according to the terms of our Privacy Policy.

  1. Transfer of ownership. If LifeDNA undergoes a business transition such as an acquisition or merger, the LifeDNA Research study may be terminated. In such case, your information would remain subject to the promises made in any pre-existing Privacy Policy.
  2. Termination of service. LifeDNA may terminate your access to the Personal Genome Service or any account you may have without prior notice as described in the Terms and Conditions. If your access to the Personal Genome Service is terminated for any of these reasons, your participation in the LifeDNA Research study may also be terminated.

7. Who do I contact if I have questions?

If you have general questions and need help with LifeDNA's service, please contact:

aloha@LifeDNA.com
1-877-543-3362 (9 AM - 5 PM, Pacific Time)