Frequently Asked Questions
What is Stanford Precision Health Biobank?
Precision Health Biobank is a hospital wide effort to bank all willing patients DNA, RNA and blood cells for research. Participation is entirely voluntary and your medical care at Stanford will not be affected if you decline to participate. You will be asked to provide 4 tubes of blood. The blood will be banked at Stanford Hospital and we will make DNA and RNA from your samples.
How do I participate?
Stanford Precision Health Biobank is a hospital wide effort to bank all willing patients DNA, RNA and blood cells for research. Participation is entirely voluntary and your medical care at Stanford will not be affected if you decline to participate. You will be asked to provide 4 tubes of blood. The blood will be banked at Stanford Hospital and we will make DNA, RNA and stem cells from your blood sample.
Is there a benefit to me for participating?
We cannot guarantee you will receive any direct benefit by participating in Stanford Precision Health Biobank.
It is important to note that we will not necessarily immediately screen your DNA for specific gene information, but will add your samples to samples from other patients and screen when we have an appropriate group of samples for analysis. We hope such studies will promote human genetic research, and foster collaboration with other institutions - all with the end goal of improving patient care. We cannot guarantee that each patient will benefit in some way from the study, other than the contribution to the quality of healthcare for all humans. However we will screen the DNA information as it is collected on Stanford Precision Health Biobank participants and if we identify variation that might affect your risk for disease, or response to medication, we will inform your Stanford physician. This might positively affect your medical care. Also, availability of DNA stored at Stanford would facilitate various kinds of genetic testing that your physician might want to do in the future.
My doctor ordered a genetic test, is Stanford Precision Health Biobank the same as a genetic test?
No - Stanford Precision Health Biobank is a biobanking initiative for possible future genetic studies. We do not guarantee that any genetic studies will be conducted on your samples as this is research.
The genetic test your physician ordered is likely a medical service which will provide a result in a few weeks and your physician will make medical decisions based on those results. It is important to remember that Stanford Precision Health Biobank and clinical genetic testing are two different things.
If I give a sample but later change my mind what do I do?
You can change your mind about participation at any time, just notify the Stanford Precision Health Biobank team at precisionhealthbiobank@stanford.edu.
Your banked samples will be destroyed and no further research will be done with your samples,
*However if any genetic data was deposited into an NIH database this cannot be retrieved.
Is there a cost for participating?
There is no cost to you for participating in Stanford Precision Health Biobank. Your health insurance will not be billed.
What protections are in place to ensure that my privacy is maintained?
Patient privacy is extremely important to us and great care has been taken to institute a procedure that protects a participants sample and genetic data derived from it. All genetic and medical data will be protected under current privacy standards and procedures at Stanford Hospital and Clinics, including the use of unique, anonymous identifiers for samples and extensive network security measures.
Genetic research may include looking at information, such as personal appearance and biochemistry, gene sequences, genetic landmarks (DNA markers at known locations in the genome), individual and family medical histories, reactions to medications and responses to treatment. Genetic research raises certain questions about informing you of any results. Possible risks of knowing results include: anxiety; other psychological distress; and the possibility of insurance and job discrimination. Sometimes patients have been required to furnish information from genetic testing for health insurance, life insurance, and/or a job. A Federal law, the Genetic Information Nondiscrimination Act of 2008 (GINA), generally makes it illegal for health insurance companies, group health plans, and employers with 15 or more employees to discriminate against you based on your genetic information.
A possible risk of not knowing includes being unaware of the need for treatment. These risks can change depending on the results of the research and whether there is a treatment or cure for a particular disease.
Who do I contact for any concerns/questions related to Stanford Precision Health Biobank?
Please contact the Stanford Precision Health Biobank team at precisionhealthbiobank@stanford.edu.