Test Kit Study
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Test Kit Consent
THIS SERVICE WILL BE ALSO FOR RESEARCH AND EDUCATIONAL/INFORMATIONAL USE
What am I agreeing to?
i. By participating in this study, you are agreeing to allow us to use the results of your test, survey responses and any other non-identifying data for research on testosterone levels as it relates to aging and effects of certain supplements, activities and/or other factors that may change levels.
ii. We will remove any Registration Information (information you provided about yourself when registering for and/or purchasing our Services, such as name, email, address, user ID and password, and payment information) that can identify you prior to using the data for research, in order to help protect your privacy as much as possible
iii. This document describes Progene Research, an ongoing research study conducted by Progene. The study aims to understand more about testosterone levels and influencing factors. Progene seeks your voluntary participation in this study. Progene plans to ask each of its customers to participate and expects to enroll at least 5,000 participants from among its customers. Additionally, participants may be recruited through external collaborators to participate in specific projects of interest
iv. The research consists of using your Sample Information and/or survey responses and other non-identifying personal information to discover relationships with factors that impact testosterone levels.
This document explains:
A. The nature of the research
B. What you are being asked to do
C. Any risks and benefits of participation
D. And who to contact if you have questions
A. How will my data be used in research?
i. Your data will be used to learn more about testosterone levels across a wider population and the potential effects of external factors and certain supplements. Your data and responses to surveys could help to find additional factors that influence levels. Discoveries made as a result of this research could be used to help improve the lives of men as they age. The topics to be studied are narrowly focused with acquiring a larger sample size testosterone level data and potential influences of those levels.
ii. This study may cover potentially sensitive topics as it relates to testosterone levels, but only as it may directly relate to studies surrounding testosterone and the impacts of varying levels.
iii. If you participate, Progene will use your data, information you enter into surveys, forms, or features labeled with the Progene Research logo, and your age and ethnicity. Together, this data will referred to in this document and the Progene website as "Sample Information & Self-Reported Information". The Sample Information & Self-Reported Information does not include identifying information you provided when you purchased the Progene Testosterone Test Kit (TM) or created an account (such as name, address, e-mail address, or credit card information).
B. How do I participate?
i. Participation consists of donating, non-intrusive, non-medical, spit (saliva) samples for processing. You may participate further by taking surveys while signed in to your account. If you do not feel comfortable answering questions in a particular survey, you may exit the survey without finishing it. Even if you have given consent to participate, you are not required to take surveys or use features. You may also participate by entering data about yourself into other Progene forms on the Progene website.
ii. This research project is open-ended, because new surveys and features may be added to the Progene website on a continuing basis. If new surveys or features are added, you may receive an email update. When signing in to your account, you may see announcements that new surveys or features are available. Sometimes we may focus on certain characteristics for research studies. If your Sample Information & Self Reported information matches the research area of interest, we may invite you to participate in these studies.
iii. Your participation in this research project is completely voluntary. Choosing not to participate will not affect access to your data. Giving consent to participate means that you agree to let Progene investigators access your Sample Information & Self-Reported Information, including any Self-Reported Information you submitted prior to giving consent.
iv. If you are concerned about the use of previously submitted Self-Reported Information in research, you should carefully consider whether you want to give consent for your data to be used in research.
C. What will you do with my data?
i. Your Sample Information & Self-Reported Information will be stripped of personally identifying Registration Information and made available to a separate research environment. Progene investigators will then compare all participants' Sample Information & Self-Reported Information to identify associations and possible causality of varying testosterone levels.
ii. Progene may collaborate with external parties. Under this informed consent, external parties will only have access to pooled data stripped of identifying information. Progene will never release your individual-level data to any third party without asking for and receiving your explicit authorization to do so.
D. Are there any risks to participating?
i. There are some potential risks to participating in the Progene research study, as described below. Several of these risks are also presented in the Terms of Service when you signed up for a Progene TestKit.
- Your Sample Information, survey responses, and/or personally identifying information may be stolen in the event of a security breach. If your data are associated with your identity they may be made public- while the related data may or may not be of any significance, whether or not that has negative effect will be specific to each individual. Progene utilizes commercially available security methods to minimize the possibility of a breach. Although Progene cannot provide a 100% guarantee that your data will be safe, Progene procedures minimize the chance that a breach could take place.
- If Progene investigators publish results of this research study, your Sample Information & Self-Reported Information may be made public, but only after being pooled so that identification of your individual-level data is extremely difficult. While remote, it may be possible that a third party could determine from the published results, your survey responses.
- As with any online service, if you disclose your account password to others, they may be able to access your account and your Sample Information & Self-Reported Information.
- There may also be additional risks to participation that are currently unforeseen or unanticipated.
ii. None of the surveys or other procedures used by the investigators in this research study are invasive or experimental. The procedures involved do not involve more than the minimal risks described above, and no compensation or treatment is available if injury occurs as a result of participation.
E. Are there any benefits to participating?
i. The direct benefit will be information and knowledge regarding your own personal testosterone levels and potentially self determination of what products work for you with regards to managing your own levels of testosterone.
ii. Continued participation may provide you greater insight into the correlations between testosterone levels and how you feel and/or what products work for you.
iii. One of Progene missions is to make, if possible, meaningful scientific contributions by enabling its customers to participate directly in testosterone research. If Progene publishes study results in peer-reviewed journals, there may be an indirect benefit to you as scientific knowledge increases and/or new awareness about testosterone levels are more commonplace. However, you will not receive any direct compensation or other benefits from Progene or researchers for participating in research.
iv. If Progene develops intellectual property and/or commercializes products or services, directly or indirectly, based on the results of this study, you will not receive any compensation.
F. Do I have any alternatives?
i. Your alternative is not to participate in the Progene research study. If you do not give consent to participate at this time, you will be offered other opportunities to give consent, for example, if you take a Progene survey on the website.
ii. Even if you do give consent to participate in this study, you may still choose not to take Progene surveys or use other Progene features.
iii. If you choose not to give consent at this time, or if you choose not to take surveys, your access to your own Sample Information will not be affected.
G. How will you protect my data?
Progene uses a range of physical, technical, and administrative procedures to protect the privacy of your personal information, your Sample Information, and your survey responses. These measures are in place for Progene participants.
H. Could my participation end without my consent?
The Progene study may be terminated without your consent. In the following cases, Progene will maintain your Sample Information & Self-Reported Information according to the terms of our Privacy Statement.
- Transfer of ownership. If Progene undergoes a business transition such as an acquisition or merger, the Progene research study may be terminated. Progene will require an acquiring company or merger agreement to uphold the material terms of our Privacy Statement.
- Termination of service. Progene may terminate your access to your Sample Information for any of the four reasons described in the Terms of Service: if a) you have breached the Terms of Service, b) Progene is required to do so by law, c) Progene is no longer providing the Testosterone Test to customers in the country in which you are resident or from which you use the service, or d) the Testosterone Test program is, in Progene’s opinion, no longer commercially viable. If your access to the Testosterone Testing service is terminated for any of the above reasons, your participation in the Progene research study may also be terminated.
I. How do I withdraw from this study?
At any time, you may choose to withdraw all or some of your Sample Information & Self-Reported Information from Progene Research by accessing your account and choosing to cancel the account. Progene will prevent the requested information from being used in all research occurring after 30 days from receipt of your request. Any research on your data that has been performed or published prior to this date will not be reversed, undone, or withdrawn. Your Sample Information & Self-Reported Information may still be used for internal purposes as described in the Terms of Service.
J. Electronic Communications & Authorization
When you visit this Website or send e-mails to us, you are communicating with us electronically. You consent to also receive communications from us electronically. We will communicate with you by e-mail or by posting notices on this site. You agree that all agreements, notices, disclosures and other communications that we provide to you electronically satisfy any legal requirement that such communications be in writing, including electronic authorization for this any agreements you make with us.