Part of Genebank’s mission is to help people benefit from the human genome, and research is an important part of that mission. Please read the entire Research Consent Document below before making your decision to participate.
PURPOSE OF GENEBANK RESEARCH
The purpose of Genebank Research is to make new discoveries about genetics and other factors behind diseases and traits. To do this, we 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 Genebank’s product or services.
Genebank 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 cancer or 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 Genebank could help researchers better understand disease and may guide diagnosis and treatment decisions.
WHAT DOES IT MEAN TO TAKE PART IN GENEBANK RESEARCH?
If you agree to this consent, you allow Genebank researchers to use certain information (including your Genetic Information and your responses to research surveys) to study a wide variety of research topics. You will be asked to take surveys or enter information about yourself into the Genebank website or mobile app. You choose which surveys to take, which information to provide, and which questions to answer. Giving consent means that you agree to let Genebank researchers use your Genetic & Self-Reported Information (including such information provided prior to giving consent) for Genebank Research, as described above. “Genetic & Self-Reported Information”* refers to, but are not limited to, the following:
- Your genetic data
- Information you enter into surveys
- Your age and ethnicity
- Data from a third party that you authorize us to use for research
Genebank 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.
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, or charitable donations may be provided as compensation. There is no cost to take part in this research.
Some Genebank 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 Genebank 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 Genebank or any of its research collaborators, you will not receive any financial benefits.
If you have elected to have your saliva sample stored by Genebank, we may also use the results of further analysis of your sample in Genebank Research. For example, we may conduct whole genome sequencing, which allows researchers to study genetic information more thoroughly.
To protect your privacy, Genebank conducts research with information that has been stripped of your name and contact information and combined with similar information from many research participants.
Genebank uses a range of physical, technical, and administrative measures to protect your information. We regularly review and improve our privacy and security practices to help ensure the safety of your information.
Genebank research analyses are conducted with information that has been stripped of your identifying Registration Information (name, address, email address, user ID, password, or credit card). Your contact information may be used to communicate with you but are not analyzed in combination with your Genetic and Self-Reported 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.
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.
CHANGING YOUR CONSENT CHOICE
Your participation in the Genebank 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 by writing in to us at any time. If you withdraw your consent, Genebank will prevent your Genetic and Self-Reported Information from being used in new Genebank Research initiated after 30 days from when we receive your request.
There is no penalty for choosing not to give consent or for withdrawing from Genebank Research. You will not lose any benefits you receive by being a Genebank customer, including access to your Genetic Information and to the Personal Genetic Service.
If you choose not to give consent for Genebank Research, your Genetic and Self-Reported Information may still be used for other purposes, such as to improve the Genebank’s product and services.
You can review the most current version of the Research Consent at any time on this page.
We reserve the right, at our sole discretion, to update, change or replace any part of this Research Consent by posting updates and changes to our website. It is your responsibility to check our website periodically for changes. Your consent to Genebank Research following the posting of any changes to Research Consent constitutes acceptance of those changes.
Questions about the Research Consent should be sent to us at firstname.lastname@example.org.