Research Consent and Authorization Helix Research Network( HRN)
OR REVIEW ONLY
IRB APPROVED May 19, 2025
This study is part of a research network. This means that information and samples collected as part of this study will be entered into a database and will be used by approved researchers to perform many studies over time.
Study Procedures: In order to participate in this study, you must be 18 years of age or older, and have not received a stem cell transplant or a bone marrow transplant from a donor. You will provide a sample for DNA sequencing. Sequencing is the process of reading the letters of your DNA. This study may sequence your whole genome. We provide more information about what“ whole genome” means later in this consent form. Once you have given us your sample, your participation will not take a lot of your time. The research team will collect health information about you from your medical record and may ask you questions about your health using surveys or other data collection tools. Over time, you may be asked to provide additional samples for research. There is no planned end date for this study. If you choose to enroll, you will be part of this study until you withdraw or until the study ends.
Possible Risks: There are risks to participating in a research study. Some of the most likely risks of participating in this study include:
● The main risk of participating in this study is loss of privacy. We take many steps to protect your information, but as with any research study, there is always a chance that your identity could become known.
● There is a small physical risk if you give a blood sample. The most common risks are brief pain and bruising. There is also a small risk of infection. Some people may feel dizzy or rarely faint.
● Because this study includes the return of genetic results you may experience worry or concern if a result is returned to you which may impact your health or the health of your family members. You may have additional healthcare expenses as a result of learning these results if they require you to seek additional care.
There is a risk that companies that sell life insurance, disability insurance, or long-term care insurance could use your genetic information to make coverage decisions. However, there are laws that prevent health insurance companies and certain employers from using your genetic information to discriminate against you.
Possible Benefits: The main benefit of this study is to help researchers learn more about health and disease. You may benefit from participating in the study, but this cannot be guaranteed. You may consider the following to be potential benefits of participation:
● Learning information that could be important to your health.
● Learning information that could impact the health of your family members.
Your Other Options: You do not have to participate in this study. Your other choices may include taking part in another study. You may find it helpful to talk to your healthcare provider about your choices before agreeing to participate in this study.
Following is a more complete description of this study. Please read this description carefully. You can ask any questions you want to help you decide whether to join the study. If you join this study, we will give you a signed copy of this form to keep for future reference.
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