THIS SERVICE IS FOR RESEARCH AND EDUCATIONAL USE ONLY.
One of Talking20's missions is to make meaningful scientific contributions by enabling its customers to participate directly in Phenotypic research. Talking20 asks each of its customers to participate in Phenotypic research and has enrolled many participants from among its customers. Talking20 seeks your voluntary participation in Talking20 Research, an ongoing research study conducted by Talking20. The Talking20 study aims to:
· Discover environmental factors behind symptoms and diseases
· Understand how people react to their personal phenotypic information
· Learn about human activities and how they influence the body through genotype, proteomics and metabolomics
Specifically, Talking20 Research refers to research aimed at publication in peer-reviewed journals and research funded by the federal government. For further details on Talking20's other uses of personal information, see our Privacy Statement.
This document explains:
1. What you are agreeing to if you consent
2. How you can participate
3. How your data will be used
4. How we protect your data and keep it private
5. The benefits and risks of participation
6. Your options and how to withdraw
7. Who to contact if you have questions
1. What am I agreeing to?
Giving consent by checking the appropriate box below means that you agree to let Talking20 investigators use your Phenotypic & Self-Reported Information for Talking20 research, as described above.
"Phenotypic & Self-Reported Information" refers to:
· Your Phenotypic data
· Information you enter into surveys and forms
· Information you enter via features labeled with the Talking20 Research research logo
· Data you authorize us to import for research
· Your age and ethnicity
Self-Reported Information includes any information you submitted prior to giving consent. If you have elected to have your blood sample stored, we may also use the results of further analysis of your sample in Talking20 Research research. To protect your privacy, your Phenotypic & Self-Reported Information does not include identifying Registration Information you provided when you purchased the Spot Card Kit® or created an account (such as name, address, email address, user ID, password, or credit card information).
2. How do I participate?
Participation consists of (1) allowing Talking20 investigators to use your Phenotypic & Self-Reported Information for research, and (2) entering data about yourself into Talking20 Research features on the Talking20 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 Talking20 Research study is open-ended: new surveys and features may be added to Talking20 Research on a continuing basis. If new surveys or features are added, you may receive an email update or see an announcement when you sign in to your account. We might invite you to participate in a specific study if your Phenotypic & Self-Reported Information matches the area of interest.
Your participation in this research project is completely voluntary.
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.
3. How will my data be used in Talking20 Research?
Your Phenotypic & Self-Reported Information may be used to discover links between Phenotypic and non-Phenotypic markers and a variety of traits, diseases, behaviors and other characteristics, to study population history, or to assess how people respond to personal Phenotypic 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 vitamin or mineral levels, serious diseases such as cancer or diabetes, and other conditions such as migraine headache or response to over-the-counter drugs.
This study may cover potentially sensitive topics such as sexual orientation, illicit drug use or other illegal behavior, or HIV/AIDS status. When Talking20 conducts studies on these topics, you will be provided additional information to help you decide whether you want to participate in research on these topics.
4. How do you keep my data protected and private (whether or not I consent)?
Talking20 uses a range of physical, technical, and administrative procedures to protect the privacy of your personal information, your Phenotypic data, and your survey responses. These measures are in place for Talking20 Research participants. A key protection is that Talking20 Research investigators do not have access to personally identifying Registration Information (such as name, address, email address, user ID, password, or credit card information). Other measures for protecting your privacy are described in more detail in the Talking20 Privacy Statement.
Talking20 may collaborate on research with external parties. As outlined in the Privacy Statement, external parties will only have access to pooled data stripped of identifying information, with the following exceptions:
· Talking20 may release your individual-level data to a third party if we ask for, and receive, your explicit authorization to do so.
· Talking20’s partners or service providers (e.g. credit card processors or our contracted laboratory) may process and/or store your information in order to provide you with Talking20's services.
· Researchers invited by Talking20 to conduct research may access your individual-level Phenotypic & Self-Reported Information (but not your name or contact information) for the purpose of scientific research. They may access the data only onsite at Talking20’s offices, only if they agree to abide by Talking20's access rules and guidelines, and only if they are supervised by Talking20 employees.
· If we are required to do so by law, Talking20 may release the individual-level information.
· The Institutional Review Board and government officials responsible for monitoring our study may inspect the study records.
5. What are the benefits and risks of participating?
One of Talking20's missions is to make meaningful scientific contributions by enabling its customers to participate directly in Phenotypic research. If Talking20 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:
· Comparison of your personal survey responses to those of all responders.
· Electronic, graphical "badges" that signify you have contributed to one or more research projects
· Monetary or cash equivalents such as discounts on future Talking20 service purchases (up to a value of $30 per half hour of expected time).
If Talking20 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.
There are some potential risks to participating in the Talking20 Research research study, as described below:
· Some survey questions may make you or your family members uncomfortable.
· Your Phenotypic data, survey responses, and/or personally identifying information may be stolen in the event of a security breach. In the event of such a breach, if your data are associated with your identity they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage. Although Talking20 cannot provide a 100% guarantee that your data will be safe, Talking20 has strong policies and procedures in place minimize the possibility of a breach.
· When Talking20 investigators publish results from this study, your Phenotypic & Self-Reported Information may be included within pooled summaries that are made public. Identification of your individual-level data from those summaries would be extremely difficult, but it is possible that a third party that has obtained partial Phenotypic data from you could compare their partial data to the published results and indirectly determine some of 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 Phenotypic & Self-Reported Information.
· There may be additional risks to participation that are currently unforeseeable.
None of the surveys or other procedures used by the investigators in the Talking20 Research study is 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.
6. Do I have any alternatives? Can I withdraw from this study?
Your alternative is not to participate in the Talking20 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 Talking20 Research survey on the website. Even if you do give consent to participate in this study, you may still choose not to take Talking20 Research surveys or use other Talking20 Research features. If you choose not to give consent for Talking20 Research research, your Phenotypic & Self-Reported Information may still be used for other purposes, as described in our Privacy Statement.
At any time, you may choose to withdraw all or some of your Phenotypic & Self-Reported Information from Talking20 Research research by sending a request to the Human Protections Administrator at hpa@Talking20.com, or by changing your consent status within the Talking20 “Settings” page. (Talking20 will notify you if additional ways to withdraw consent become available.) You will still be allowed full access to the Personal Genome Service®, but Talking20 will prevent the requested information from being used in new Talking20 Research 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 Phenotypic & Self-Reported Information may still be used for other purposes as described in the Talking20 Privacy Statement.
Choosing not to give consent or withdrawing from Talking20 Research will not affect your access to your Phenotypic Information or to the Personal Genome Service®.
You may also discontinue participation by closing your Talking20 account, as described in the Terms of Service. Requests for account closure must be made in writing to Customer Service at privacy@Talking20.com.
In addition, the Talking20 Research study may be terminated without your consent. In the following cases, Talking20 will maintain your Phenotypic & Self-Reported Information according to the terms of our Privacy Statement.
7. Transfer of ownership.
If Talking20 undergoes a business transition such as an acquisition or merger, the Talking20 Research study may be terminated. In such a case, your information would remain subject to the promises made in any pre-existing Privacy Statement.
8. Termination of service.
Talking20 may terminate your access to the Talking20 account for any of the five reasons described in the Terms of Service: if a) you have breached the Terms of Service, b) Talking20 is required to do so by law, c) the partner with whom Talking20 offered the Personal Genome Service® to you has terminated its relationship with Talking20 or ceased to offer the service to you, d) Talking20 is no longer providing the Talking20 account to customers in the country in which you are resident or from which you use the service, or e) the Talking20 account is, in Talking20's opinion, no longer commercially viable. If your access to the Talking20 account is terminated for any of the above reasons, your participation in the Talking20 Research research study may also be terminated.
9. Who do I contact if I have questions?
If you have any questions or concerns about the study, if you suffer a research-related injury, or if you have a question about participants' rights, please contact the following:
· Talking20 Human Protections Administrator
· Email: privacy@Talking20.com
· Phone: 1-650-690-6774
If you have any questions or concerns about research that you do not wish to discuss with Talking20, you may contact the following independent, impartial research review board:
· E&I Review Services
· 100 Tamal Plaza, Suite 158
· Corte Madera, CA 94925
· Email: firstname.lastname@example.org
· Phone: 1-800-472-3241
If you have general questions about Talking20's service, please contact:
· Talking20 Customer Service
· Email: privacy@Talking20.com