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Introduction

By clicking the “I Agree” button, you consent to participation in scientific research to help advance the study of human genetics and health. At 54gene, we are committed to helping scientists better understand population history and improve human health. This Research Consent covers research that may be performed by 54gene, a third-party researcher or in collaboration between 54gene and a third-party researcher (the ReseaArch).

Your consent to participate in the Research is completely voluntary and does not affect the use of any of our products or services. You may withdraw your consent at any time. However, your information will not be removed from research that is in progress or completed. We encourage you to carefully read the full text below before deciding whether to give consent.

This document explains the following:

  1. What is the 54gene Research?
  2. What am I agreeing to if I consent?
  3. Who conducts the Research?
  4. What data is used?
  5. How do I participate?
  6. How is my Data used and shared if I give consent?
  7. How do you keep my data protected and private (whether or not I consent)?
  8. What are the risks and benefits of participation?
  9. Do I have any alternatives? Can I withdraw from this Research?
  10. Who do I contact if I have questions?

Our mission is to advance scientific discovery in the areas of human genetics and and health. Our research is aimed at:

Studies performed in the Research may lead to related commercial developments of new products and the publication of scientific articles.

We refer to 54gene and our affiliated companies collectively as “ 54gene,” “us,” “we,” or “our.”

By giving consent to participate in 54gene Research, you agree to let us collect and use your information and biological sample for research related to the Purpose until the Research is completed or ends.

Employees of 54gene perform some of the research. We also work with researchers from other organizations and companies who share our Purpose including academic institutions as well as non-profit and for-profit businesses or government agencies (“ Collaborators”) who may in turn work with other entities to conduct research associated with our Purpose (“ Collaborator Partners”). The Research may be performed solely by us, or by Collaborators with or without help from our researchers or Collaborator Partners. All researchers, whether affiliated with 54gene, our Collaborators, or Collaborator Partners are referred to in this Research Consent as “ Researchers.” 54gene will review all research requests for Biological and DNA Samples (as described below).

Data used for the Research includes:

Participation in the Research is completely voluntary. Participation consists of consenting to the use of your data for the Research, and entering data about yourself into the Research features on the 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.

New surveys and features may be added to the website on a continuing basis. If new surveys or features are added, we may invite you to complete these activities. Such invitations will be sent using routine communication methods, such as email, push notifications or announcements when you sign in to your account.

You are not required to respond to any additional request or take additional surveys. If you do not respond or do not want to provide additional materials for the Research, we may continue to use your Data and Biological Samples as permitted by this Research Consent but for no additional purpose.

Also, if we or a Collaborator wants to use your Data or DNA Samples in a manner beyond what is described in this Research Consent or to conduct research unrelated to the Purpose, we will first contact you to see if you’re interested in hearing about this new research opportunity and if you are interested in possibly providing additional consent.

If you decide to participate, the Researchers may use your Data, including your DNA Sample, for:

The result of the Research could lead to discoveries in understanding the basic causes of disease, development of drugs or other treatments and/or preventive measures, or the prediction of a person's risk of disease. The topics to be studied span a wide range of traits and conditions, from common to rare such as hair colour 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 the Research may be sponsored by or conducted on behalf of third parties, such as non-profit foundations, academic institutions or pharmaceutical companies. The Research may cover potentially sensitive topics such as sexual orientation, illicit drug use or other illegal behavior, or HIV/AIDS status in which case you will be provided additional information to help you decide whether you want to participate in research on these topics.

Data and Biological Samples, may be shared with Collaborators and Collaborator Partners, but will be shared without your name, contact information or other common identifying information. When your Biological Sample is shared, it is labelled only with a code.

Our Privacy Statement, outlines how we protect your Data from unauthorized access. We employ multiple layers of physical, technical, and administrative procedures to protect your Data from unauthorized access while conducting our business. These same procedures are used by us to protect your Data used in the Research. The procedures employed include:

In addition, we require our Collaborators and Collaborator Partners to use similar physical, technical, and administrative procedures to protect the Data and Biological Samples we share with them.

Benefits:

Your participation may help advance scientific and medical knowledge. If the results of the Research are published in peer-reviewed journals, there may be an indirect benefit to you as scientific knowledge increases and/or new drugs or tests are developed. However, the results of the Research will not be communicated to you nor will you receive any treatment or diagnosis of any health condition as a result of the Research. Based on the results of the Research, we may develop intellectual property, including but not limited to patents, copyrights and trademarks, and may commercialize products or services, directly or indirectly. In such cases, no financial compensation will be provided to you.

Risks:

There are no physical risks involved with providing a DNA Sample and having your Data used in the Research. There are some potential risks to participating in the Research as follows:

None of the surveys or other procedures used by the researchers in the Research is invasive or experimental. The procedures involved do not involve more than the minimal risks described above.

Your alternative is not to participate in the Research. Participation in the Research is entirely voluntary and is not required to use any of our products or services. However, please note that by signing up and providing us with your saliva for a free genetic testing, you consent to us using your Genetic information on an anonymous basis for our research purposes.

You may withdraw your consent at any time via the 54gene account settings page. If you change your consent status or withdraw any of your data, we will stop using your Data in the research within 30 days from the day of such change or withdrawal and the Data will not be used in any future research. However, Data cannot be withdrawn from research already in progress or completed, or from published results and findings. In those cases, Researchers may have access to such Data about you indefinitely and published research will not be reversed, undone or withdrawn.

There is no negative impact to you for withdrawal of your consent, and you will be able to use our Services as before. Withdrawing your consent will not result in destruction of your DNA Sample or deletion of your Data from our products and services, unless you direct us otherwise. If you want your DNA Sample destroyed or your Data deleted from our products and services, we will promptly do so at your request but additional steps are required. Please contact Head of Research at the applicable email below for assistance.

In addition, the Research may be terminated without your consent in the following cases:

This Research Consent does not have an expiration date. If you do not withdraw consent, it will remain in effect until you withdraw or we end the Research.

If you have general questions and need help with 54gene’s service, please contact:

Customer Care

hello@54gene.com

If you have any questions or concerns about the 54gene Research study, if you suffer a research-related injury, or if you have a question about subjects' rights, please contact the following:

Head of Research

Email: research@54gene.com