Frequently Asked Questions
This research program aims to investigate the genetic predisposition of disease development, specifically looking for mutations that may impact various health conditions. Our goal is to establish a scientific database to help advance our understanding of healthcare and medicine. There may also be a future potential for some participants to receive genetic testing results that would hold the potential to inform personalized care recommendations in the future while advancing our understanding of healthcare and medicine.
No, the genetic testing and analysis offered by this research program are of no cost to you. However, any recommended follow-up care or testing outside of the study is subject to health insurance or out of pocket costs.
While there are no direct benefits to participants, those who may receive medically actionable genetic results may benefit from learning about the increased risks for an associated condition. Risk information can be helpful to your care providers, so they can offer updated, personalized care recommendations. Some participants may be informed that their family members are at an increased risk for the same condition. This information may help lead to early screenings or other preventive measures that benefit them. Our research may benefit the public by increasing the medical community’s knowledge about different diseases and the ability to inform treatments. You may be eligible for future research studies that will continue contributing to medical advancements.
Any patient 18 years or older who has received medical services from Baylor Medicine is eligible to participate
Yes, all new and established Baylor Medicine patients 18 years or older are eligible to participate.
A downloadable, unsigned copy is available here. If you wish to receive a copy of your signed consent form please email [email protected].
Yes, there are many types of genetic testing and research programs. If you have already had your DNA sequenced as part of another program or clinical test, you are still eligible to participate in the IMAGINE research program.
The next time your physician or provider orders a test that requires a blood draw, we will collect a sample for purposes of this study. No additional visit is required.
After you provide your sample, it will be transferred to the Baylor College of Medicine Human Genome Sequencing Center for sequencing. The remaining sample not used for sequencing will be de-identified and stored in a secure biobank to be used for future research.
Your genetic data will be analyzed to identify mutations relevant to disease development. Portions of your genetic data, if deemed relevant to your health, may be shared with Baylor Medicine providers and other healthcare staff and will be added to your medical record.
Participant confidentiality is a top priority. Data used for the purposes of research will be removed of direct identifiers and assigned a numerical code. Your personal information will not be disclosed to researchers. Only key study staff responsible for study operations will have access to your information.
If an actionable mutation is identified, you will be notified by a physician or genetic counselor, and the information will be added to your medical record. You will also receive relevant guidance or recommendations for further evaluation or preventive measures. Any follow-up care with your physician or genetic counselor is considered outside the scope of the study and may be subject to insurance or out-of-pocket costs.
Your coded research data, removed of direct identifiers, may be shared with qualified researchers in other academic or industry settings. External sharing of data will follow strict protocols to ensure participant confidentiality.
The IMAGINE research program may return results that have been deemed medically relevant and/or actionable. This may include information that suggests you are at an increased risk for developing certain conditions, such as cancer or high cholesterol. Not all patients will have genetic findings that are medically relevant, so you may not receive results from this program.
Time frames to receive results may vary. Not all patients will have genetic findings that are clinically relevant, so you may not receive results from this program.
There is a federal law, called the Genetic Information Nondiscrimination Act (GINA) that makes it illegal for health insurance companies, group health plans, and most employers to discriminate against you based on your genetic information.
GINA’s health insurance protections do not cover long-term care insurance, life insurance, or disability insurance.
Click here to learn more about GINA: Genetic Information Nondiscrimination Act (GINA) (genome.gov)
Vibrent Health is our partner who provides access to educational content about our program and provides online access to review and sign the program’s consent form. They will also administer surveys that will aid in our research. These surveys are optional.
In order to answer surveys that will help us with research, a Vibrent Health account is needed. To Create an account, please follow these steps:
1. Create an account using either your email address or mobile phone #
2. Create a password that meets the stated requirements on the registration screen
3. Complete account verification using the code that was sent to your email or mobile phone
In order to login to complete the surveys or program activities:
1. Visit the login screen and enter the email address or phone number and password that was used during registration
2. To log in from the registration screen, click "Already have an account? Sign In" at the bottom of the registration space
How do I reset my password?
1. Click "forgot password" link at the bottom of the login screen
How do I view information I've provided?
1. To view the survey responses you have already provided, click "My Data" in the left navigation bar
Yes, participation in the program is entirely voluntary. You have the right to withdraw at any time without any consequences or impact on your medical care. Please send an email to [email protected] if you wish to withdraw.
If you withdraw, your samples will be destroyed and no new data will be generated using your sample or individual information. However, if research data has already been generated using your sample, we may not be able to retract it once you withdraw from the study.
Clinical results obtained and returned through the program will appear in your medical record. The study team will not be able to remove information from your medical record. As with other information in your medical record, standard HIPAA (Health Insurance Portability & Accountability Act) guidelines, and Baylor Medicine procedures should be followed for requests to amend information in your medical record.
Still have questions? We would be happy to help you!
Our team is available
Monday - Friday
8:00AM - 4:00PM CST
Register now for the IMAGINE Program today!