What do we do?
During your care at Regional One Health, you will most likely have blood drawn. Although we draw only the blood we need, sometimes there is a little left over. Usually, the leftover blood is thrown away, but with your permission and consent we could save it so it could be used to extract DNA. The extracted DNA would be stored in the Integrative Genomics Biorepository (IGB) and be made available to researchers striving to develop new treatments and cures for diseases.
We will create a link between each patient’s de-identified medical record and the DNA sample to allow researchers to better understand how genes directly affect one’s health. For instance, if we wanted to study the DNA of children with asthma, we would need the ability to pull only those samples belonging to patients with asthma. Having a link to the medical record makes the samples even more useful. The information from each patient’s medical record will be coded so that the patient cannot be re-identified.
The IGB is a locked containment facility. Access to the biorepository and related information systems is very tightly controlled, and you will never be identified in any presentation or publication arising from research involving your DNA.
Participation in the BIG Initiative
Donating your DNA to this research biorepository provides opportunities for researchers to help discover new treatments, new relationships between genes and diseases, and even cures for future patients. As a participant, you could play an important role toward creating a brighter future for health care.
Eligibility for Participation
Every patient is eligible to participate in this initiative. While at Regional One Health, we may visit you in person or give you a call to discuss the BIG Initiative, explain how it works, and how one can choose to participate. You will be enrolled only after you provide consent to enroll. If the patient is a minor, parental consent is required to enroll. Participation in this biorepository is completely voluntary and has no cost. You may decide not to participate, and Regional One Health will simply discard any unused portions from your blood draws as we always have.
Participation in the biorepository is always completely voluntary. If you’ve given consent but later change your mind, contact us at BIG-ROH@uthsc.edu or 901-545-8699 and your DNA and personal health information will be removed from the biorepository. Please bear in mind that samples and information that have already been sent to researchers cannot be retrieved by the biorepository and may be used for research indefinitely. Send or leave us a message, and we will get back to you as soon as possible.
Privacy and Security
Many steps will be taken to protect your privacy. Any information that could directly identify a patient from their sample will be removed and replaced with a code number. Patients’ names will never show up in the DNA sample database, and the master list linking the code number back to the patient will be kept in a separate, secure location from the samples themselves. Every effort will be made to protect all samples and personal health information in the biorepository.
The biorepository is covered by a Certificate of Confidentiality from the National Institutes of Health. Even a court order cannot force us to reveal any information from this project. If anyone should gain access to the genetic information that is produced from your sample, there is a law that protects against using this information to make it harder to get or keep health insurance, jobs, or other opportunities.
We will maintain communication about the initiative with you and your family by making newsletters available twice a year. The newsletter will be sent to the email address provided by you during enrollment and will also be placed on this website. If you have changed your email please call us at 901-545-8699 and we will update your information.
Additionally, with your permission, researchers may contact you for enrollment in future studies which may or may not return results of genetic testing.