Project IMPROVE Informed Consent
Effective Date: January 17th, 2024
At Kience myHealth, part of our mission is to advance research related to the study of human health. One way we do that is to offer our customers the opportunity to participate in scientific research performed in the United States and in other countries designed to:
- IMPROVE understanding of human health;
- IMPROVE knowledge of links between various diseases or conditions;
- IMPROVE decryption of the connection between chronic diseases and human traits;
- IMPROVE diagnostic tools and therapies to treat diseases or other conditions; and
- IMPROVE your own health, through a series of recommendations processed automatically with our own Machine Learning (ML) based algorithms on the data you provide us. (together, the "Purpose").
As to any internal Kience myHealth product development or enhancement work that is not covered by this consent, such development or enhancement is covered by the Kience myHealth Terms and Conditions and Legal Notice and Privacy Policy.
We are hopeful that this research will help scientists better understand and improve human health.
Fully Informed Consent
1. What is the Kience myHealth Project IMPROVE?
At Kience myHealth, part of our mission is to advance research related to the study of human health. One way we do that is to offer you the opportunity to participate in scientific research performed in the United States and in other countries designed to:
- IMPROVE understanding of human health;
- IMPROVE knowledge of links between various diseases or conditions;
- IMPROVE decryption of the connection between chronic diseases and human traits;
- IMPROVE diagnostic tools and therapies to treat diseases or other conditions; and
- IMPROVE your own health, through a series of recommendations procesed automatically with our own AI based on the data you provide us. (together, the "Purpose").
We refer to all research focused on the Purpose that Project IMPROVE (the "Project"). We refer to myhealth.kience.com and our affiliated companies collectively as "Kience myHealth" "us", "we", or "our".
Studies performed under this Project may lead to related commercial developments of new products.
2. What am I agreeing to if I consent?
By giving consent to participate in the Project, you agree that all information that you share with us (as further described below) through your use of our websites, mobile applications, and products that exist now, or in the future (our "Services") can be collected and used for research consistent with the Purpose until the Project is completed or ends (which may be many years from now). Anyone who has activated an Kience myHealth product or service at any time can voluntarily participate in this Project.
3. Who conducts the research?
Employees of Kience myHealth perform some of the research for the Project. We also work with researchers from other organizations and companies who share our Purpose. This might include academic institutions as well as non-profit and for-profit businesses or government agencies ("Collaborators").
These Collaborators may also work with other entities to conduct research associated with our Purpose ("Collaborator Partners"). Find out more about our Collaborators here. The research for the Project may be performed solely by us, or by Collaborators with or without help from Kience myHealth researchers or Collaborator Partners. All researchers, whether affiliated with Kience myHealth, our Collaborators, or Collaborator Partners are referred to in this Informed Consent as "Researchers". Kience myHealth will review all research requests for Personal Health Information (as described below).
In some instances, Kience myHealth receives compensation from Collaborators who work on the Project. Some of the researchers who are employees of Kience myHealth also have a significant amount of stock or other ownership in Kience myHealth or myhealth.kience.com. If you have concerns about this employment and stock ownership, ask for more information via the contact information listed below.
4. What data is used?
When you give consent, Researchers may use all data that you provide to us when you use our Services, including Personal Health Information and any data derived from this information (the "Data"). Data includes:
- Self-Reported Personal Health and Information: Information that you voluntarily share with us about the health, medical conditions, diseases, lifestyle or other traits of you and your family members, for example through the Kience myHealth tools or by answering questions on our Services;
- Other Data about you: information that you share with us when you register, create a profile, or use your account, and information we obtain from other sources, such as publicly available genealogical data or demographic information; and
- Additional Data that may be shared in the future: other information you voluntarily share with us as we expand our Services, such as biosensor data recorded by mobile phones or activity trackers or health and wellness data collected from other devices. You are under no obligation to share additional data with us. However, if you do and you have given consent to participate in the Project, it may be used by the Researchers.
We take your privacy seriously and value the trust you put in us when you allow us to use your Data. Our privacy statements describe how we handle your Data and our compliance with applicable laws for cross-border transfers of Data. As part of the Project, Researchers outside the United States may access and use your Data. If this occurs, those further cross-border transfers of Data will be made in compliance with the mechanism described in our privacy statements. For more information, refer to our Legal Notice and Privacy Policy.
5. How is my Data used and shared if I give consent?
If you decide to participate, the Researchers may use your Data, including your Personal Health Information, for:
- Research that is consistent with our Purpose; and
- Publication of research results in scientific or medical journals and in other publications and presentations. Your name, contact information and other common identifying information are always removed prior to making any research public.
Personal Health Information, 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.
When we collaborate with government agencies on research, we take all necessary steps to protect the privacy and integrity of your Personal Health Information in accordance with laws and regulations pertaining to government-funded research. In some instances, if we partner with, or our research is funded by, certain U.S. agencies like the National Institutes of Health, we may be required to contribute certain Data to a national database that will be accessible by other researchers. In the event such contribution is required, we will only provide Data that has had identifying information removed in accordance with U.S. federal regulations.
Your Data may also be shared with others who review the quality and safety of the research (for example, the U.S. Food and Drug Administration, other regulatory agencies. We will never knowingly disclose or interpret your Data for use by employers or insurers for employment or insurance purposes.
On the other side, our own AI will analyze all the data provided by you and will make you recommendations to improve your health. All this analysis will be performed in an automatic way, without any link to your name, contact information and other common identifying information, as well as without any human interaction.
6. How is my Data protected?
As described in our Legal Notice and Privacy Policy, we use 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 Project. In addition, we require our Collaborators and Collaborator Partners to use similar physical, technical, and administrative procedures to protect the Personal Health Information we share with them.
7. If I consent, will Kience myHealth or Collaborators and Collaborator Partners contact me?
We, Kience myHealth, may contact you from time to time to request additional information for the Project. You are not required to respond to any requests from us about the Project -the choice is yours-. If you do not respond or do not want to provide additional materials for the Project, we may continue to use your Personal Health Information as permitted by this Informed Consent but for no additional purpose.
Also, if we or a Collaborator wants to use your Personal Health Information in a manner beyond what is described in this Informed Consent or to conduct research unrelated to the Purpose, we will first contact you to see if you are interested in hearing about this new research opportunity and if you are interested in possibly providing additional informed consent.
8. Are there any risks to me?
There are no physical risks involved with having your Personal Health Information used in this Project. There are some potential risks to participating in the Project as follows:
- Data about you could become public as the result of a security breach. Although we have strong policies and processes in place designed to minimize the possibility of a security breach (see the controls described above) and we require our Collaborators and Collaborator Partners to have similar controls, we cannot provide a 100% guarantee that a breach will never happen.
- When Researchers publish results from the Project, such results may include your Data, but only as part of aggregated results across many people to minimize the chance that your personal information is identified. But it is possible that third parties could identify you from research that is made publicly available, for example if they are able to combine your Personal Health information that is available to them that links your name or other common identifying information. However, identification of your individual data would be extremely difficult, because it would be published as part of an aggregated summary of information for many people and without any common identifying information.
- When Personal Health Information are physically transferred from us to Collaborators, there is a potential risk that the data could be lost or stolen while in transit or storage. We take precautions to reduce the likelihood that this will happen and your Personal Health Information is not transferred with your name or contact information.
- If we were to provide you with recommendations to improve your health, you may receive information that you do not expect or that makes you uncomfortable, such as a potential health condition.
- Finally, if we were to provide you with information about your genetic data, you may learn information about you or your genetic relatives that you do not expect or that makes you uncomfortable, such as potential health risks.
9. Are there any costs if I consent? Do I receive compensation or other benefits if I consent?
There is no cost to you for the Project.
There is no benefit to you for participating in the Project beyond receiving recommendations about your own health as you provide us with more information. Your participation may help advance scientific or medical knowledge. However, no financial compensation will be provided to you for any commercial developments related to the Project that may be developed by Researchers. Finally, research results will not be communicated by Researchers to you.
10. Do I have to consent to the Project?
No, your participation is voluntary. No one is required to participate in the Project. If you choose not to participate in the Project, you can still use our Services, including activating your Kience myHealth service. We do not consider the participation of an employee, or an employee's relatives, in the Project when making employment or benefit decisions. No one should influence or pressure you to participate in the Project.
We may terminate the Project at any time without notice to you. In that event, your Data will continue to be protected as described in this Informed Consent and our applicable privacy policy.
11. What is my alternative to participating?
Your alternative is not to participate in the Project. You will receive services from Kience myHealth regardless of your participation and participation is not required to use any of our products or services.
12. Can I withdraw from the Project?
Yes, you can withdraw your consent at any time on the Kience myHealth settings page. Until you withdraw or we end the Project, there is no limit to how long we will use your Personal Health Information for the Project. If you withdraw, we will cease using your Data for the Project within 30 days and the Data will not be used in 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. There is no negative impact to you for withdrawal of your consent, and you will continue to be able to use our Services as before. Withdrawing your consent will not result in termination of services or deletion of your Personal Health Information from Kience myHealth products and services, unless you direct us otherwise. If you want your Personal Health Information deleted from Kience myHealth products and services, we will promptly do so at your request but additional steps are required.
This Informed 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 Project.
13. Who can I contact about the Project?
Please contact us if you have any concerns, complaints, or questions about the Project:
Kience Inc. DBA Kience myHealth
1000 N West St, Suite 1200
Wilmington, DE 19801-1058
USA
Email: hello@kience.com