Take Control Of Your Health. You are a unique individual. Why shouldn’t your medical care be unique, too? BioMe™ Biobank is an ongoing collection of blood samples, genetic data, and health information to be used for present and future research projects.
Using genetic information obtained from de-identified blood samples, along with health information, our scientists can gain a better understanding of the factors that cause disease. This understanding may then lead to interventions that prevent a disease from occurring or to finding new targets for treating a disease.
Physicians across many specialties at Mount Sinai strongly encourage all of their patients to enroll in the BioMe™ Biobank. They understand a study such as the BioMe™ Biobank allows clinical data to be linked with data derived from DNA and plasma with the ultimate goal of allowing researchers to have a better understanding of a wide variety of disease conditions. Patients are incredibly enthusiastic to join such a large study with extraordinary potential to impact lives, and the feedback on patients’ altruistic attitudes toward participation is moving and never gets old, according to Aimee Lucas, MD, Assistant Professor, Division of Gastroenterology, Icahn School of Medicine at Mount Sinai.
“I feel a sense of pride and responsibility when it comes to my health and the health of my children. Signing up for BioMe makes me feel like I am doing my part. If my contribution helps even one patient in the future, I know I’ve made a huge difference in someone’s life. Every patient should sign up. It’s easy, important, and eye-opening to the possibilities of what can be done.”
-De-identified BioMe Participant
Here are answers to some of the most important questions about BioMe at The Institute for Personalized Medicine.
Why should I participate in the BioMe Biobank Program?
By participating in BioMe, you are contributing to research that may inform new ways to prevent and treat disorders that could affect you, your family, or your friends. Heart disease, cancer, asthma, diabetes, and Alzheimer's disease are just a few of the conditions BioMe™ may help scientists understand. BioMe is a non-interventional, minimal risk study that does not impact your immediate clinical care or patient-provider relationship in any way. Participation involves a one-time blood draw and a short lifestyle & family health history questionnaire. Your written consent, which is required, could provide a lifetime of benefits to the research world and future generations. In addition, by studying family members, we can learn much about genetics and why people develop certain diseases.
Am I eligible to participate in BioMe?
All patients, 1 day of age or older, who have received preventive and/or clinical care at Mount Sinai Health System and/or its affiliates, are eligible to provide written consent to participate in the BioMe Biobank Program. Though active participation, following written consent, is a one-time only experience, you may be approached by a BioMe Clinical Research Coordinator who may offer you the opportunity to:
- update your family health history by completing the most current version of our questionnaire. The more data you are able to provide, the more robust the Biobank will be.
- provide another research blood sample to complete your active enrollment requirements
- update your consent form to indicate your preference to potentially receive genetic results of high medical importance returned to you.
If I consent to participate, what will be asked of me?
After a BioMe Recruiter explains the BioMe Biobank Program and answers your questions, you will be asked to read and sign a “Consent Form to Volunteer in a Research Study” that the Recruiter (Coordinator) will also co-sign. You will be offered a copy of this consent form for your records.
- The Coordinator will administer the family health history questionnaire, which will take approximately fifteen minutes.
- You will have a small amount of blood drawn from your arm (1 tube). The blood may be drawn at the same time as your routine blood draw for medical care, as part of your participation in another Mount Sinai research study, or solely for BioMe™ Biobank purposes.
- You will be consenting to retrospective and prospective access to de-identified medical record information by ethics committee-approved investigators. You are consenting to BioMe sharing your specimens and data (pre-specified phenotypic criteria) for broad future research.
- By signing the consent form, you will be consenting to the possibility of future contact by the BioMe™ Biobank team.
- You will be asked to initial your preference in your consent form for the potential receipt of genetic results of high medical importance generated on your BioMe sample and to be confirmed through clinical genetic testing.
How will BioMe protect my privacy?
Subject rights, confidentiality, and privacy are protected in various ways and at every stage of participation in BioMe, all while allowing research to be performed on de-identified clinical information from Mount Sinai's data warehouse system. In storage and when shared with researchers, your samples and health information will only be identified by a code. No names or other identifying information will be shared with anyone without your prior approval. BioMe takes the privacy of all participants seriously and, for that reason, the National Institutes of Health awarded BioMe a "Certificate of Confidentiality," which helps assure confidentiality and privacy. BioMe also safeguards its subjects through careful ethics committee reviews and through data quality assurance. For more information, contact BioMebiobank@mssm.edu.
Our semi-annual BioMe Newsletter is sent to enrolled BioMe participants to keep them abreast of our research.