Privacy
At The African Kinship Reunion (TAKiR), we are committed to being a responsible steward of your Personal Information. We handle your data with the utmost care and secure it using a combination of administrative, technical, and organizational safeguards. This Privacy Policy clearly outlines how we collect, use, store, and share your data when you interact with our website as a user or participate in our research project. Our goal is to maintain transparency and build trust with our users and participants by adhering to stringent privacy practices.
Frequently Asked Questions (FAQ)
If you have previously given consent for the processing of your Personal and Genetic Information, you also have the right to withdraw that consent at any time. Please note that withdrawing consent does not affect the lawfulness of any processing carried out before the withdrawal.
Key Principles
Transparency: We are dedicated to being open and transparent about the Personal Information we collect and process. We will clearly communicate what data we gather, how we use it, and with whom we share it.
Simplicity: We strive to explain our privacy practices in a clear, concise, and easy-to-understand manner. Our goal is to empower you to make informed decisions about your Personal Information.
Control: You are in control of the Personal Information you provide to us, including your genetic data. We will respect your decisions regarding how your data is used, shared, and retained, and provide you with the tools to manage your preferences.
Data Collection
Website Usage and Account Creation
When you visit our website, create an account, or subscribe to our newsletter, we collect personal information such as your name, email address, and contact information. This information is used to manage your account, provide you with relevant updates, and communicate important information about our genealogy services and research project.
Your name, email address, and contact information
Demographic data, such as age, gender, and ethnicity
Genetic information obtained through DNA testing
This sensitive information is collected solely for the purpose of providing genealogy services and facilitating your participation in any research that you consent to. We understand the importance of protecting your personally identifiable information (PII) and adhere to strict data protection protocols in compliance with industry standards and applicable laws.
What's Next?
All personal information collected, whether through website usage, account creation, or participation in our research project, is used exclusively to provide you with genealogy services, improve our platform, and conduct genealogical research. We employ robust security measures to protect your PII and maintain the confidentiality, integrity, and availability of your data.
We are committed to being transparent about our data collection practices and ensuring that you have control over your personal information. If you have any questions or concerns about the data we collect or how it is used, please contact our privacy team at contact@takir.org.
Biological Samples and DNA Data
DNA Sample Collection and Processing
When you use our services, there are several ways we may obtain your DNA data:
Prequalified Participants: If you are prequalified for our research project based on specific criteria, we will send you a saliva collection kit with instructions on how to safely collect and return your sample to us. Upon receiving your saliva sample, we will extract DNA at the Roy J. Carver Biotechnology Center at the University of Illinois at Urbana-Champaign, our trusted partner laboratory. The extracted DNA will then be genotyped to convert it into machine-readable data.
Uploaded DNA Profiles: You may choose to upload your existing DNA profile from another company. We will securely process the uploaded data and use it to determine if you qualify for further participation in our research project.
Combination of Uploaded DNA Profile and Saliva Sample: In some cases, you may upload your existing DNA profile, and based on the results, we may invite you to provide a saliva sample for additional testing. In this scenario, we will follow the same process outlined in the "Prequalified Participants" section above.
Regardless of how we obtain your DNA data, once the genotyping process is complete, we will securely destroy any saliva samples in accordance with industry standards and best practices.
Personal and Genetic Information
Your DNA data, whether obtained through our saliva collection process or uploaded from another company, along with any ethnicity estimates, genetic relative matches, and other related insights, are considered your Personal and Genetic Information. We are committed to protecting this sensitive information using robust security measures and strict data protection protocols.
Sample Storage
Please note that we do not offer the option to store your biological samples (saliva or extracted DNA) for future testing. All saliva samples will be destroyed after the DNA extraction and genotyping process is complete, minimizing the risk of unauthorized access or misuse of your biological materials.
If you have any questions about how your biological samples and DNA data are collected, processed, and protected, please contact our privacy team at contact@takir.org.
Data Usage and Sharing
No Sale or Rental of Personal or Genetic Information
We do not sell, trade, or rent your Personal or Genetic Information to third parties. Your data is used exclusively for the purposes outlined in this Privacy Policy and the informed consent process, such as providing genealogy services, conducting our research project, and communicating with you about the study.
Collaboration with External Researchers or Organizations
In the event that we collaborate with external researchers or organizations, we do not share any raw data, even if you have consented to participate in research. Instead, we conduct all analyses within our secure computing environment to maintain the highest level of data protection and privacy.
Notification of Research Opportunities
Based on your research consent selections, we may notify you of opportunities to participate in research projects conducted by external researchers or organizations. However, even in these cases, you have full control over whether to share your data and what specific information you wish to share. We will not disclose any of your Personal or Genetic Information without your explicit opt-in consent.
Transparency and Communication
We are committed to maintaining transparency in our data usage and sharing practices. Any collaboration with external researchers or organizations will be clearly communicated to you, along with details about the nature of the research project and how your data will be used. You will have the opportunity to ask questions and raise concerns before deciding whether to participate.
If you have any questions or concerns about how your data is used or shared, please contact our privacy team at contact@takir.org.
Data Security
At TAKiR, we employ state-of-the-art security measures to protect your Personal and Genetic Information from unauthorized access, alteration, disclosure, or destruction. Our comprehensive security framework includes:
Encryption: All data transmitted between your device and our servers is secured using industry-standard encryption protocols, such as Transport Layer Security (TLS). Your data is also encrypted at rest using Advanced Encryption Standard (AES) with 256-bit keys, ensuring that it remains protected even in the unlikely event of a data breach.
HIPAA-Compliant Infrastructure: We leverage Amazon Web Services (AWS) HIPAA-compliant infrastructure to store and process your data. AWS provides a highly secure, scalable, and resilient environment that meets the stringent requirements of the Health Insurance Portability and Accountability Act (HIPAA). This ensures that your Personal and Genetic Information is handled in accordance with the highest standards of privacy and security.
Access Controls: We implement strict role-based access controls to ensure that only authorized personnel can access your data. Access is granted on a need-to-know basis and is regularly reviewed to maintain the principle of least privilege. Multi-factor authentication is enforced for all user accounts with access to sensitive information.
Monitoring and Logging: Our systems are continuously monitored for potential security threats and anomalies. Detailed access logs are maintained to track all interactions with your data, allowing us to quickly identify and respond to any unauthorized activities. We use advanced security information and event management (SIEM) tools to correlate logs and detect potential security incidents in real-time.
Regular Audits: We conduct regular internal and external audits to assess the effectiveness of our security controls and ensure compliance with industry best practices and relevant regulations. Third-party security experts are engaged to perform penetration testing and vulnerability assessments, helping us identify and remediate any potential weaknesses in our security posture.
Employee Training: All TAKiR employees undergo mandatory security and privacy training to ensure they understand their responsibilities in protecting your Personal and Genetic Information. We foster a culture of security awareness and continuously educate our team on the latest threats and best practices.
Rest assured that we are committed to maintaining the highest standards of data security to safeguard your sensitive information. If you have any questions or concerns about our security practices, please contact our security team at contact@takir.org.
Participant Rights
As a participant in our research project, you have the following rights concerning your Personal and Genetic Information:
Right to Access: You have the right to request access to your Personal and Genetic Information that we hold. You can log into your account at any time to view and download your data.
Right to Rectification: If you believe that any of your Personal or Genetic Information is inaccurate or incomplete, you have the right to request that we correct or update it. You can make changes to your personal information directly through your account settings, or by contacting our support team.
Right to Erasure: You have the right to request that we delete your Personal and Genetic Information from our systems. Please note that in some cases, we may need to retain certain information for legal, regulatory, or research integrity purposes. However, we will always inform you of the specific reasons if we are unable to comply with your request.
Right to Restrict Processing: You have the right to request that we restrict the processing of your Personal and Genetic Information. This means that we will continue to store your data, but will not use it for any further processing until the restriction is lifted.
Right to Object: You have the right to object to the processing of your Personal and Genetic Information for specific purposes, such as marketing or research. We will carefully consider your objection and respond accordingly, unless we have compelling legitimate grounds to continue the processing.
Right to Data Portability: You have the right to receive a copy of your Personal and Genetic Information in a structured, commonly used, and machine-readable format, and to transmit that data to another controller without hindrance.
Right to Withdraw Consent: If you have previously given consent for the processing of your Personal and Genetic Information, you have the right to withdraw that consent at any time. Please note that withdrawing consent does not affect the lawfulness of any processing carried out before the withdrawal.
If you wish to exercise any of these rights or have any questions about your rights as a participant, please contact our privacy team at contact@takir.org. We are committed to honoring your rights and will respond to your requests in a timely manner.
Changes to this Privacy Policy
We may update or modify this Privacy Policy from time to time to reflect changes in our practices, technologies, or legal requirements. When we make changes, we will revise the “Last Updated” date at the top of the Privacy Policy.
If the changes are significant, we will provide a more prominent notice, such as sending an email notification or displaying a notice on our website. We encourage you to review this Privacy Policy periodically to stay informed about how we collect, use, and protect your Personal and Genetic Information.
Your continued use of our website or participation in our research project after the revised Privacy Policy has been posted signifies your acceptance of the changes. If you do not agree with any term in the revised Privacy Policy, please refrain from using our website, providing any personal information, or participating in the research.