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:
LifeDNA seeks your voluntary participation in LifeDNA Research.
This document explains:
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:
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).
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.
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.
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:
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.
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:
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.
There are some potential risks to participating in the LifeDNA Research study, as described below.
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.
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.
If you have general questions and need help with LifeDNA's service, please contact:
1-877-543-3362 (9 AM - 5 PM, Pacific Time)