Cancer Project Consent Form
Darwin’s Ark Authorization, Consent and Release Agreement
Who is collecting the data?
This data collection is part of Darwin’s Ark, a non-profit citizen science initiative focused on enabling large scale genomic research for the benefit of human and animal health. The initiative is administered by the Darwin’s Ark Foundation and is led by scientific principal investigator Dr. Elinor Karlsson at the University of Massachusetts Medical School, in partnership with the Broad Institute of Harvard and MIT.
Why is this initiative being done?
This initiative will identify genetic changes connected to traits and diseases found in the companion animal (aka pet) population. By finding the genetic factors that influence whether an animal has a particular trait or disease, the investigators aim to understand the underlying biological mechanisms and help advance medical research. This will help both pets and people, as we share many of the same genes. The investigators will study physical traits, behavioral traits, and disease related traits.
How will this initiative involve my pet?
If you choose to participate in one of the Darwin’s Ark projects, the investigators will ask you to provide information about your pet’s age, sex, appearance, living environment, behavior and health through short web based questionnaires. The investigators will also ask that you collect a DNA sample in the form of saliva. For some studies, the investigators may ask you to provide a blood sample, collected by your veterinarian, from your dog. You may also be asked to attach a silicone dog tag, provided by the investigators, to your dog’s collar.
What is the possible discomfort or risk of allowing my pet to join the initiative?
Participation in this initiative should cause little to no discomfort or risk to your pet. There are no foreseeable risks to the health, comfort, or lifespan of your pet that may arise from the use of the donated DNA in the laboratory. A blood draw may cause a slight momentary discomfort to your pet as the needle is inserted. There is a small possibility that some bruising might be seen around the draw site. This should cause your pet only marginal, short-term discomfort and not have any major consequences. We require that the blood draw procedure and any necessary restraint be carried out by licensed veterinary professionals only.
What are the potential benefits, if any, from joining this initiative?
Individual animals and humans will derive minimal direct benefit from participating in this initiative. In the future, the data collected from this initiative may enable research that may lead to the development of new medical treatments for sick animals and humans.
How long will the initiative continue?
Darwin’s Ark Foundation anticipate recruitment of new pets will be ongoing. Any cessation of recruitment will be posted on the project web site at darwinsark.org.
What will happen to the information collected about my pet?
Darwin’s Ark Foundation will keep personal identifying information (including owner names and contact information) strictly confidential. Genetic data and related phenotype data (traits) from each pet will be made publically available upon publication of any related research results or earlier. Publicly released genetic and phenotype data will not include owner information. We will provide you with your pet’s data upon request. If you chose to share this information with individuals outside of this project, we can no longer ensure that your pet’s genetic data will remain anonymous.
What will happen if I change my mind?
You and your pet’s participation in this initiative is voluntary. However, by this consent, you agree to relinquish the rights to the data you submit, the samples you donated, and any experimental results derived from their use. If you decide later to withdraw your pet from the initiative we ask that you notify the Darwin’s Ark Foundation in writing and state the reasons for withdrawal.
Are there reasons why my pet may be excluded from the research?
If we are unable to obtain sufficient high quality DNA from your pet’s saliva or blood, we will not be able to include your pet in the initiative. Pets will be selected for genetic analysis based on questionnaire provided information, research objectives, and available funding. The investigators cannot guarantee that your pet will be included for genetic analysis. The principal investigator may terminate this initiative at any time for any reason.
What will my pet’s samples be used for?
DNA extracted from saliva or blood samples will be used to determine your pet’s genome sequence. DNA may also be used to identify bacteria, viruses and other microbiota. The silicone dog tag will be used to identify chemicals in your dog’s environment.
For how long will my pet’s samples be used?
In addition to using your sample(s) for current research, we may use samples submitted for this project for future studies by ourselves and by other researchers. Sharing of samples maximizes the your pet’s potential impact has on health research.
How will the identity of my pet’s samples be protected?
A unique identifier will be assigned to each sample, and the identity of your pet will not be included in any genetic results reported or made publicly available. Darwin’s Ark Foundation may include your pet’s name (without identifying last name or owner’s name) and/or picture in social media, blog posts, web-based information, newsletters or other informational materials.
Questions or concerns?
Please first check the FAQ and forums at darwinsark.org to see if your question has been answered there. If not, you can email us at firstname.lastname@example.org.
I am the owner or the agent for the owner of the pet described above, and I have the authority to execute this release. I have read this Consent Form and hereby certify that the nature of the research has been made clear to me. I have had an opportunity to ask questions about the project and understand that I can ask questions at any time. Furthermore, I voluntarily agree to give my pet’s saliva and/or blood for this initiative. I understand that, if I chose to collect samples from my pet, and/or choose to participate in passive sampling with silicone dog tags, I do so at my own risk and that the principal investigator, the University of Massachusetts Medical School, the Broad Institute and the Darwin’s Ark Foundation are not responsible for any injuries or expenses incurred as a result. I also understand that by signing this Consent Form, I give up all future claims to these specimens and any experimental results that may be derived from their investigational use. I give my permission for my contact information to be stored and for you to re-contact me regarding my pet’s health or questionnaires posted at the darwinsark.org website.
With respect to any and all activities in which I participate relative to this initiative, I hereby relieve, release, discharge, indemnify, and forever hold free and harmless the Darwin’s Ark Foundation, Broad Institute, University of Massachusetts Medical School, and their respective agents, servants, employees, officers and Trustees, from and against any and all claims, disputes, liabilities, and damages (including but not limited to bodily injury, wrongful death, property damage and all reasonable attorney’s fees and costs) arising from and/or related to my acts, conduct or omissions associated with or related to my participation in this initiative.
I agree to allow the use of my pet’s first name and/ or picture for social media, blog posts, web-based information, newsletters or other informational materials related to this initiative.
I further agree I will in no way mistreat my pet in my participation in this initiative.
If I have any questions or problems that I feel are related to the initiative, I can contact Dr. Elinor Karlsson, the Principal Investigator of the initiative via e-mail at email@example.com.
I CERTIFY AND AGREE I HAVE CAREFULLY READ AND FULLY UNDERSTAND THE TERMS AND CONTENT OF THIS “AUTHORIZATION, CONSENT AND RELEASE AGREEMENT.” I AM AWARE THIS IS A RELEASE OF LIABILITY. I AM OF LEGAL AGE, COMPETENT, UNDER NO DURESS, AND I AM SIGNING THIS DOCUMENT AS MY OWN FREE ACT AND WILL.
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Document Name: Cancer Project Consent Form
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