Research Study Participant Privacy Policy

About the Dog Aging Project

The Dog Aging Project (DAP) is a longitudinal, observational research study that brings together a community of dogs, owners, veterinarians, researchers, and volunteers to carry out the most ambitious canine science project in the world. Our team of 40+ researchers, led by Dr. Daniel Promislow and Dr. Matt Kaeberlein at the University of Washington and Dr. Kate Creevy at Texas A&M, has built a collaborative, open data research platform that harnesses the power of citizen science, allowing pet owners to participate in our research efforts. As a participant in our study, you will help us achieve two fundamental goals: understanding how genes, lifestyle, and environment influence aging and intervening to increase healthspan, the period of life spent free from disease. The Dog Aging Project is supported by a grant from the National Institute on Aging (NIA), a part of the National Institutes of Health (NIH), which is a federally funded granding agency, and by private donations.

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 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). The data we obtain from you and your dog will be kept under this code number.  All of your data and your dog’s data will be stored in an encrypted, password-protected database. Likewise, 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. 

The UIN will be the only link between your PII and the information, data, and samples we collect about you and your dog. The link between the UIN and your PII will be stored separately.

The DAP is covered by a Certificate of Confidentiality from the NIH. This helps us protect your privacy. The Certificate means that we do not have to give out identifying information about you even if we are asked to by a court of law. We will use the Certificate to resist any requests for identifying information.  

We cannot use the Certificate to withhold your research information if you give your written consent to give it to an insurer, employer, or other person. Also, you or a member of your family can share information about yourself or your part in this research if you wish.

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. One reason why the DAP is an Open Data project is to meet the mandate and continued commitment of our granting agency, the National Institutes of Health (NIH), to ensure that, to the fullest extent possible, the results of federally-funded scientific research are made available to and are useful for the general public, industry, and the scientific community. We also firmly believe that it is through data sharing that investigators in the US and even around the world can conduct additional analyses of DAP data that will contribute to our understanding of living systems, and therefore help to enhance our knowledge of how to improve health, lengthen life, and reduce illness and disability. 

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 only exception to keeping your identity private would occur 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.