GeneSprout’s mission is to help children benefit from the human genome, and research is an important part of that mission. Here are some highlights from our Research Consent Document. Please read the entire consent document below before making a decision to participate.

Key information:

• The purpose of GeneSprout Research is to make new discoveries about genetics and other factors behind diseases and traits.

• If you agree to this consent, you allow GeneSprout researchers to use certain information (including your Genetic Information and your responses to research surveys) to study a wide variety of research topics.

• To protect your privacy, GeneSprout conducts research with information that has been stripped of your name and contact information and combined with similar information from many research participants.

• Some GeneSprout Research is conducted in collaboration with third parties, such as non-profit organizations, pharmaceutical companies, or academic institutions. We may share summaries of research results, which do not identify any particular individual, with qualified research collaborators and in scientific publications.

• It is unlikely that you will directly benefit from your participation, though you and others may benefit in the future from discoveries that lead to healthcare advances or improvements to GeneSprout’s product or services. There is a very small risk that someone could get access to your Personal Information (information that can be used to identify you) without your permission in the event of a privacy breach.

• Taking part in this research is completely voluntary, and you can change your consent choice at any time without affecting your access to the GeneSprout product or services.

Purpose: Why is GeneSprout doing research?

GeneSprout Research aims to make and support scientific discoveries about genetics and other factors behind diseases and traits. To do this, we will conduct our own research and support the work of other researchers around the world by collaborating and publishing our findings in scientific journals. Results of our research may be used to help develop new ways to diagnose and treat disease, or new reports and features for the GeneSprout product or services.

We study:

• The genetic and other factors behind diseases and traits

• Ways to diagnose and treat diseases

• How people react to learning about their genetics or how they interact with an online genetics

  and health platform

Topics include simple traits such as weight, height, and child development, as well as medical conditions such as asthma, food allergies, or diabetes.

GeneSprout makes discoveries by analyzing information across large numbers of research participants to find patterns. These patterns might tell us, for instance, if people with a particular set of genetic factors are more likely to get a disease such as food allergies, diabetes, or asthma. Another pattern might point to a new way to treat a disease. Results of our research may be used to help develop new drugs. Some discoveries made by GeneSprout could help researchers better understand disease and may guide diagnosis and treatment decisions.

What does it mean to take part in GeneSprout Research?

If you choose to take part in GeneSprout Research, you will be asked to take surveys or enter information about yourself into the GeneSprout website or mobile app. You choose what information to share, which surveys to take, and which questions to answer. Giving consent means that you agree to let GeneSprout researchers use certain information (including such information provided prior to giving consent) for GeneSprout Research.

We may use the following information for GeneSprout Research:

• Your Genetic Information

• Your Self-Reported Information

  • Your age and ethnicity

  • Information you enter into the website or mobile app that is labeled as GeneSprout Research

  • Data from a third party that you authorize us to use for research

• How you interact with the GeneSprout platform — for example, what genetic reports you view or which research surveys you take

Collectively, we refer to these data as Research Information.

• GeneSprout Research is open-ended: we may inform you of new surveys and research opportunities as they are added. We may also invite you to participate in specific studies based on information you’ve previously provided. We use routine communication methods to inform you of research opportunities. We may send you email invites and/or notifications in your account or on your mobile device.

• When GeneSprout conducts studies on sensitive research topics, you will be provided additional information to help you decide whether you want to take part in this research.

• Depending on the research activity, we may or may not provide you with compensation for your time. For some longer or more involved research activities, cash equivalents may be provided as compensation. There is no cost to take part in this research.

• Some GeneSprout Research may be sponsored by or conducted in collaboration with third parties, such as non-profit organizations, pharmaceutical companies, or academic institutions whose additional expertise and/or resources can help GeneSprout make important discoveries. Sometimes research discoveries lead to products or inventions that have value if they are made or sold. In situations where your information contributed to an invention or product that profited GeneSprout or any of its research collaborators, you will not receive any financial benefits.

• Your child may take part in GeneSprout Research if a parent or legal guardian authorizes GeneSprout to use their Research Information for research.

*You can learn more about Genetic Information, Self-Reported Information, Registration Information and other Personal Information in our Privacy Statement.

How is my privacy protected?

GeneSprout uses physical, technical, and administrative security measures to protect your information. We regularly review and improve our privacy and security practices to help ensure the safety of your information. These practices include, but are not limited to, the following:

• GeneSprout research analyses are conducted with information that has been stripped of your identifying Registration Information (information you provide when you register your account, such as your name and contact information). Your contact information may be used to communicate with you but are not analyzed in combination with your Research Information.

• When we publish research results or share results with collaborators, we only publish or share summary information that does not identify any particular individual.

• GeneSprout maintains an internationally recognized security standards certification for our robust data privacy and security systems.

• All GeneSprout employees are trained on how to work with human research participants, and GeneSprout researchers receive additional training on how to conduct research responsibly.

Who will have access to my information?

• Outside of GeneSprout:

  • We may share summaries of research results, which do not identify any particular individual, with qualified research collaborators and in scientific publications. We will not ask you for separate permission every time we share summary information with qualified research collaborators or publish in scientific journals.

  • We may share information with our ethics review board (also called an Institutional Review Board or “IRB”) and other agencies to maintain our compliance, or as otherwise required by law.

• Within GeneSprout:

  • GeneSprout researchers who conduct analyses will have access to your Research Information, but not to your identifying Registration Information.

  • For further details on GeneSprout’s other uses of Personal Information, see our Privacy Statement.

What are the benefits and risks of taking part in GeneSprout Research?

Benefits:

• You will not receive any direct benefits by taking part in GeneSprout Research. For example, we will not give you individual results about your genetics or health risks that we learn through GeneSprout Research. You may, however, receive indirect benefits:

  • Sometime in the future, you or others, including people who share your ancestry or health characteristics, may benefit indirectly from GeneSprout Research discoveries, such as those that improve GeneSprout product or services offerings or contribute to ways to prevent and treat disease.

  • By taking surveys, you may learn about GeneSprout's Research findings as we provide periodic updates on the research.

Risks:

• Discomfort: Some survey questions or data comparisons may make you uncomfortable.

• Privacy: Although GeneSprout has strict policies and practices in place to minimize the risk of a breach, there is a very small risk that a breach of your Personal Information can happen. For example:

  • In the event of a breach, your Research Information could be exposed outside of GeneSprout. In some cases, a breach could also expose information about family members who share some of your DNA.

  • There is a remote chance that an individual could be re-identified from summary information, including from published research results. In theory, a bad actor who has obtained your genetic data could compare your data to the summary research results and determine that you had participated in a particular study, and could possibly learn things about you related to the study.

• There may be additional risks to participation that are currently unforeseeable.

Can I change my mind?

• Your participation in the GeneSprout Research study is completely voluntary, so you may choose to not participate. If you change your mind about participating, you can change your consent choice in your Account Settings at any time. If you withdraw your consent, GeneSprout will prevent your Research Information from being used in new GeneSprout Research initiated after 30 days from when we receive your request from your Account Settings.

• There is no penalty for choosing not to give consent or for withdrawing from GeneSprout Research. You will not lose any benefits you receive by being a GeneSprout customer, including access to your Genetic Information and to the Personal Genetic Service.

• You may also stop participation by closing your Personal Genetic Service account. Requests for account closure can be made directly within your Account Settings.

• If you choose not to give consent for GeneSprout Research, your Research Information may still be used for other purposes, such as to improve the GeneSprout product and services, as described in our Privacy Statement.

• Your participation in GeneSprout Research could be terminated without your consent in the case of a transfer of ownership of GeneSprout or termination of GeneSprout products or services.

Who do I contact if I have questions?

If you have general questions and need help with GeneSprout’s product or services, please contact: hello@genesprout.com.

If you have any questions or concerns about GeneSprout Research, have problems changing your consent status, suffer a research-related injury, or have a question about participants’ rights, please contact the GeneSprout Human Protections Administrator.

If you have any questions or concerns about research that you do not wish to discuss with GeneSprout, click here to contact the independent, impartial research review board for this study.

You can also print a this page if you would like to review the research consent information in paper form.