The SCAN study has ended as of July 31, 2022. Learn more about the history and accomplishments of the study here.
Information we collect
We generally collect the following information:
- Information we receive when you use our Services. We collect Web-Behavior Information via cookies and other similar tracking technologies when you use and access our Services (our website, mobile apps, products, software, and other services).
- Information you share directly with us. We collect and process your information when you consent and enroll in this research activity or contact our staff. This information can generally be used as Registration Information and/or Self-Reported Information as seen in our full Privacy Statement.
- Pathogen Information from testing your sample(s). After you give consent to enroll in this research and have a sample collected, we will test your sample. We may perform further testing to analyze the specific pathogen strain if it is found.
How we use information
We generally use Personal Information for the following reasons:
- To conduct our research and to provide our Services. We process Personal Information in order to carry out our research and to provide our Services, which may include sending test kits to participants, creating participant accounts, analyzing respiratory samples, updating our maps of respiratory pathogens including COVID-19 in Seattle and King County, and delivering test study results.
- To analyze and improve our Services. We are always working to improve and provide new reports, tools, and Services, and to fix bugs and other issues as they occur. Additionally, we analyze website, app, and online survey use to improve user experience and improve our public awareness and marketing campaigns.
- To provide information in a large data pool for research analyses. Information that identifies you will not be shared or made identifiable.
Control: Your choices
Participating in our research and using the services are voluntary. You can stop at any time. If you provide consent and participate in this research , your respiratory sample and associated data, as well as de-identified information will be stored so that other researchers can use it in the future.
Access to your information
Your Personal Information may be shared in the following ways:
- With our service providers, including our testing laboratories, as necessary, for them to provide their services to us.
- With Local Health Jurisdictions and the Department of Health. Washington State law requires that we report certain conditions (including COVID-19,) to these organizations. If your sample is tested for one of these conditions, these organizations may contact you to ask you additional questions. They will keep your information private.
- With researchers. The information and/or samples we obtain from you from this research activity may be used for future studies. We will remove anything that may identify you from the information and samples.
How we secure information
We use different ways and systems to make your information and our research data is kept private, accurate, safe, and available for public health work.
FULL PRIVACY STATEMENT
This Privacy Statement applies to the www.scanpublichealth.org website owned and operated by the Brotman Baty Institute at the University of Washington (the “UW Institute”) and any other websites, pages, features, or content the UW Institute owns or operates, and any related services (collectively, the “Services”). In this Privacy Statement, terms such as “we,” “us,” and “our” refer to the UW Institute. Our Privacy Statement is designed to help you better understand how we collect, use, store, process, and transfer your information when using our Services.
Please carefully review this Privacy Statement. By using our Services, you acknowledge all of the policies and procedures described in the foregoing documents. If you do not agree with or are not comfortable with any aspect of this Privacy Statement, you should immediately discontinue use of our Services.
The University of Washington Online Privacy Statement also applies to this website, which is published by a University of Washington (UW) education, research, patient care or service area. The UW is committed to respecting individuals’ privacy. By choosing to use this UW website, you agree to the UW’s collection and use of personal information and non-personal information as described in the Online Privacy Statement. This Online Privacy Statement only governs the use and disclosure of information collected through this website. Additionally, the University of Washington Website Terms and Conditions of use can be found here.
1. Key definitions
- Aggregate Information: information that has been combined with that of other users and analyzed or evaluated as a whole, such that no specific individual may be reasonably identified.
- De-identified Information: information that has been stripped of your Registration Information (e.g., your name and contact information) and other identifying data such that you cannot reasonably be identified as an individual, also known as pseudonymized information.
- Personal Information: information that can be used to identify you, either alone or in combination with other information. We collect and store the following types of Personal Information:
- Registration Information: information you provide about yourself when registering for our Services (e.g. name, email, address and telephone number).
- Pathogen Information: information regarding whether a respiratory pathogen is present in your swab sample, generated through processing of your sample by us or our contractors, successors, or assignees; or otherwise processed by and/or contributed to us.
- Self-Reported Information: information you provide directly to us, including your illness conditions, other health-related information, and other information that you enter into surveys, forms, or features while using our website or a mobile application.
- Sensitive Information: information about your health, and certain Self-Reported Information such as racial and ethnic origin, sex, and pre-existing conditions.
- Web-Behavior Information: information on how you use our Services collected through log files, cookies, web beacons, and similar technologies, (e.g., browser type, domains, IP addresses, page views).
2. Information we collect
Information you provide directly to us
- Registration Information. When you volunteer to participate in this research study we may collect Personal Information such as your name, shipping address, and contact information (e.g., email or phone number).
- Self-Reported Information. You will be asked to provide us with additional information about your health, who you are around, and your living situation.
- Participant Care. When you correspond with us about our Service, we collect information to: track and respond to your inquiry; investigate any breach of our Privacy Statement, applicable laws or regulations; and analyze and improve our Services.
Information related to our sample testing services
- Respiratory sample and biobanking. To participate in this research study, you need to have at least one nasal swab collected and sent to our laboratory. Our laboratory will process your sample and analyze it for respiratory pathogens. Prior to swab collection, you will be required to carefully review the study information and consent form.
Web-Behavior Information collected through tracking technology (e.g., from cookies and similar technologies)
- help us recognize you when you use our Services;
- customize and improve your experience;
- provide security;
- study how our Services are used (including possible future services) such as to study your interactions with the results, reports, and other features of existing Services);
- gather demographic information about our user base;
- offer our Services to you; and
- monitor the success of awareness programs.
We may receive reports based on the use of these technologies from third-party service providers as de-identified, Individual-level Information, or Aggregate Information.
Google Analytics is used to perform many of the tasks listed above. We use the User-ID feature of Google Analytics to combine behavioral information across devices and sessions (including authenticated and unauthenticated sessions). We have enabled the following Google Analytics Advertising features: Remarketing, Google Display Network Impression Reporting, Google Analytics Demographics and Interest Reporting, and DoubleClick Campaign Manager integration. We do not give data for or use advertising through Google Analytics. We do not use information collected through any Google advertising product with individual-level information collected elsewhere on this platform. Learn more about how Google collects and uses data here. To opt out of Google Analytics Advertising Features, please use Google Ad Settings here.
Other types of information
We continuously work to enhance our Services with new products, applications, and features that may result in the collection of new and different types of information. We will update our Privacy Statement and/or obtain your consent prior to new processing, as needed.
3. How we use your information
We will use and share your Personal Information with third parties only in the ways that are described in this Privacy Statement. Our legal basis for processing your Personal Information for the purposes described above is based on your permission to participate in this research study . You may withdraw your consent at any time by contacting us at email@example.com; however, the withdrawal of your consent will not affect the lawfulness of processing your Personal Information based on consent before its withdrawal.
We use the information described above to conduct our research and to operate, provide, analyze, and improve our Services. These activities may include, among other things, using your information in a manner consistent with this Privacy Statement to:
- Send you a nasal swab testing kit if you are eligible, communicate with you, and implement your requests;
- Let us use and improve your use of our website, including keeping track of your visits and tracking your use of our Services;
- Contact you about your account, if applicable, and any related information about our Services (e.g., policy changes, security updates or issues);
- Monitor, detect, investigate, and prevent prohibited or illegal behaviors on our Services, to combat security risks
- Perform research and development activities, which may include, for example, conducting data analysis and research in order to develop new or improve existing products and services, performing quality control activities, and updating a neighborhood map of the coronavirus in Seattle; and
- Process and analyze your respiratory sample test results for our research purposes,
For you to take part in our research , you need to have at least one nasal swab collected and sent to our laboratory. Our laboratory will process your sample and analyze it for the novel coronavirus that causes COVID-19. Prior to using the swab, you will need to carefully review the information and permission form.
Once you have agreed to take part in this research , any information you give us may be used to inform other research studies. With institutional permission, de-identified information may be used in additional secondary analyses aimed at publication in peer-reviewed journals conducted by us or third parties.
Our secondary analyses may be sponsored by, done for or with other groups such as public health organizations, non-profit foundations, academic institutions or pharmaceutical companies. Our analyses may study a specific group or population, identify potential areas or targets for diagnostics or treatment development, conduct or support the development of drugs, diagnostics or devices to diagnose, predict or treat medical or other health conditions, work with public, private and/or non-profit entities on respiratory pathogen research initiatives, or otherwise create, commercialize, and apply this new knowledge to improve health care. We use Aggregate and/or Individual-level Personal Information as was said in our permission form, and explained in more detail below.
Your De-identified Information and Self-Reported Information may be used for our research only if you signed the consent form for this research study in which you are enrolling. If you have agreed to the consent form:
- Your Personal Information will be used for public health or secondary analyses purposes, but it will be de-identified and will not be linked to your Self-Reported Information.
- We may share summary statistics, which do not identify any particular individual or contain individual-level information, with our public health partners and collaborators.
Withdrawing your Consent.
You may withdraw your consent to participate in our research at any time by contacting us at firstname.lastname@example.org. If you experience difficulties changing your consent status, contact the Human Subjects Division at 206-543-0098 or call collect at (206) 221-5940. Any research involving your data that has already been performed or published prior to your withdrawal from our research study will not be reversed, undone, or withdrawn.
- You may discontinue your participation in this research study at any time.
To recruit you for research
- Research is an important aspect of our Services and we want to let interested persons know about opportunities to contribute to research studies. If you have chosen to take part in our research and have opted to receive information about related studies, we may send you an email informing you of research opportunities for which you may be eligible. However, we will not share Individual-level Self-Reported Information with any third party without your consent. If you do not wish to receive these notifications, you may contact us at email@example.com.
To provide user support
When you contact us, we may use or request Personal Information, including Sensitive Information, as necessary to answer your questions, resolve disputes, and/or investigate and troubleshoot problems or complaints.
4. Information we share with third parties
General service providers may share the information described above in Section 2 with our third-party service providers, as necessary, for them to provide their services to us. This helps us perform our research and public health activities . Service providers are third parties (other companies or individuals) that help us to provide, analyze, and improve our Services. While we directly do most of the data processing activities required for our research , we do ask for help from some other service providers to assist in supporting our research , including in the following areas:
- Our fulfillment and shipping. Our fulfillment processor processes certain Registration Information, such as your mailing address, as necessary, to enable us to send you a test kit with a nasal swab to your home if you are eligible. Our distribution center ships your kit to you, and in some cases helps return your kit safely to our laboratory so your sample can be processed.
- Cloud storage, IT, and security. Our cloud storage providers provide secure storage for information in our databases, ensure that our infrastructure can support continued use of our data by public health, and protect data in the event of a natural disaster or other disruption to the Service. Our IT and security providers assist with intrusion detection and prevention measures to stop any potential attacks against our networks. We have these third-party experts perform penetration tests and periodically audit our security controls.
- Marketing and analytics. When you use our Services, including our website or mobile app(s), our third-party service providers may collect Web-Behavior Information about your visit, such as the links you clicked on, the duration of your visit, and the URLs you visited. NOTE: Our service providers act on our behalf. We implement procedures and maintain contractual terms with each service provider to protect the confidentiality and security of your information. However, we cannot guarantee the confidentiality and security of your information due to the inherent risks associated with storing and transmitting data electronically.
We may share Aggregate Information, which is information that has been stripped of your name and contact information and combined with information of others so that you cannot reasonably be identified as an individual, with third parties. This Information is different from "Individual-level" information and is not Personal Information because it does not identify any particular individual or disclose any particular individual’s data. For example, Aggregate Information may include a statement that "30% of our research subjects correctly self-identified the symptoms of their illnesses," without providing any data or testing results specific to any individual user. In contrast, Individual-level Self-Reported Information consists of data about a single individual's health status or other traits/characteristics information.
As required by law
Under certain circumstances your Personal Information may be subject to processing pursuant to laws, regulations, judicial or other government subpoenas, warrants, or orders. For example, we may be required to disclose Personal Information in coordination with regulatory authorities in response to lawful requests by public authorities, including to meet national security or law enforcement requirements. We will preserve and disclose any and all information to law enforcement agencies or others if required to do so by law or in the good faith belief that such preservation or disclosure is reasonably necessary to: (a) comply with legal or regulatory processes (such as a judicial proceeding, court order, or government inquiry) or obligations that we may owe pursuant to ethical and other professional rules, laws, and regulations; (b) enforce our rights under the EULA and other policies; (c) respond to claims that any content violates the rights of third parties; or (d) protect the rights, property, or personal safety of the UW Institute, their respective employees, users, clients, and the public.
5. Security measures
We take seriously the trust you place in us. We use physical, technical, and administrative measures to prevent other users who do not have permission to access or to share your information. We also use these methods to maintain data accuracy, ensure the appropriate use of information, and otherwise safeguard your Personal Information.
Separation of environments
We ensure processing, production, and public health data environments are separated and access is restricted. Data, including Registration Information and Self-Reported Information, are segmented across logical database systems to further prevent re-identifiability. Limiting access to essential personnel: We limit access to Personal Information to authorized personnel, based on job function and role. Our access controls include multi-factor authentication.
Managing third-party service providers
We require service providers to implement and maintain accepted industry standard administrative, physical, and technical safeguards to protect Personal Information. Your Responsibility. Please recognize that protecting your Personal Information is also your responsibility. You should not share your enrollment survey links with others to whom you do not wish to give access to your Personal Information. We cannot secure Personal Information that you release on your own or that you request us to release. Your information collected through the Service may be stored and processed in the United States or any other country in which the UW Institute or its respective subsidiaries, affiliates, or service providers maintain facilities and, therefore, your information may be subject to the laws of those other jurisdictions which may be different from the laws of your country of residence.
6. Children's privacy
We are committed to protecting the privacy of children as well as adults. This site is not directed to children under 13 years of age. We do not knowingly collect Personal Information from anyone under 13 years of age. If we determine upon collection that a user is under this age, we will not use or maintain his or her Personal Information without the parent/guardian’s consent.
7. Linked websites
We provide links to third-party websites operated by organizations not affiliated with us. We do not disclose your information to organizations operating such linked third-party websites. We do not review or endorse and are not responsible for the privacy practices of these organizations. We encourage you to read the privacy statements of each and every website that you visit. This Privacy Statement applies solely to information collected by us and our service providers on our behalf.
If you believe that we have infringed your rights, we encourage you to contact us so that we can try to address your concerns or dispute informally.
9. Changes to this Privacy Statement
10. Contact us
If you have questions about this Privacy Statement, or wish to submit a complaint, please email our staff at firstname.lastname@example.org, or send a letter to: Brotman Baty Institute Box 357657 University of Washington, Seattle WA 98195 (206) 543-9660
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