Research Study Participant Privacy Policy

The DAP Privacy Commitment

We respect the privacy of every research participant. We recognize that you are volunteering to share your time and information with the DAP team in order to contribute to our scientific research. Protecting your privacy and safeguarding your personal information is our top priority.

This privacy policy has been developed in conjunction with the University of Washington legal department in accordance with applicable state, local, national, and international laws and requirements. All privacy practices described here apply only insofar as permitted by these laws and requirements.

This document outlines the information that the DAP may collect from you and how it may be used as well as how the DAP will store and protect your information, especially personally identifiable information (PII). For the purposes of this privacy statement, PII includes your name, address(es), telephone number(s), email address(es), and date of birth. PII is information that can be used to identify you. It will be kept private and inaccessible to persons and entities who are not members of the study staff (see details below).

The Data Collected by the DAP

When you nominate your dog for the DAP, you will be asked to submit your responses to the Health and Life Experience Survey, an extensive questionnaire about your dog’s health, lifestyle, behavior, and environment. Most of these questions are about your dog, but some are about you and your living environment. Additionally, we will request that you submit your dog’s complete veterinary medical history. Throughout the study, you may be asked to provide ongoing information about your dog. You or your veterinarian may be asked to collect physical samples such as saliva, urine, blood, or stool. These samples will become the property of the DAP.

Safeguarding Your Data

Your dog will be assigned a unique identification number (UIN). This UIN is a code number and will be the only link between your PII and the information, data, and samples we collect about you and your dog. All of your data will be stored in an encrypted, password-protected database. As our research study progresses, all of our data analyses will be associated with and stored under your dog’s UIN and not your name or other PII. Within the DAP, we will limit who has access to your PII. We will make every effort to ensure the security and integrity of our database. If there is a breach of security, we will inform you.

Use of Data by the DAP

The information, data, and samples we collect about you and your dog are intended for use in scientific research on how genes, lifestyle, and environment influence aging. We hope to learn about any interventions that may help to increase healthspan, the period of life spent free from disease.

Sharing Your Data

The DAP is an Open Data project. This means that the DAP data will be available to other researchers and to the public. All shared data will consist of non-personally identifiable information. It will be coded with your dog’s UIN, and the link back to you will be inaccessible to these external partners. In some cases, we or other researchers may want to contact you again for participation in a future study. Only our study team would contact you directly, not researchers who are unknown to you. You are under no obligation to enroll your dog in any future study.

Who May See Your Personally Identifiable Information

Government or university staff members sometimes review studies such as this one to make sure they are being done safely and legally. If a review of this study takes place, your records may be examined. The reviewers will protect your privacy. The study records will not be used to put you at legal risk of harm.

If we are required by law to share data relevant to any legal proceedings, we will make all reasonable efforts within the law to maintain your privacy and the confidentiality of your data.

If we learn that you intend to harm yourself or others, including your dog, we must report that to the authorities.

Discoveries with Commercial Potential

Research conducted under the DAP may result in discoveries that may lead to the creation of intellectual property and even products with commercial value. Your PII will not be associated with any intellectual property or products. The discoveries and products will be the property of the discoverer. You will not receive any commercial profits. Your data will not be used for any other purposes (such as marketing or promotional material) without your explicit consent. We will NEVER sell your data or contact information.

Your Rights and Choices

You have the right to withdraw from the DAP at any time. Withdrawal does not constitute the removal of the data that we have already collected from you. This information will remain in our database because removing your data from our database would adversely affect the statistical conclusions of our analyses. Your PII will never be shared.

Questions or Concerns

If you have questions or concerns about this privacy policy, participation in the DAP, or your DAP data, please contact us directly.