Frequently Asked Questions
I have a medical condition. Can I still participate?
If you have a medical condition, please ask your physician before participating. We will be drawing 30ml of blood as part of the study, and if your medical condition means this blood draw could put you at risk, please consult your physician first or do not participate.
Will I be compensated?
No, we will not be offering compensation for participating in this study.
How long will participating take?
Your participation will involve attending a group consent session; creating an online account; filling out several surveys; and providing blood, urine and stool samples. We expect this to take approximately two hours combined.
What data will be made public, and where?
All omics data we collect as a result of this study will be de-identified and made public on a Stanford-hosted site. This includes your genome data. Your genome data may also be submitted to an NIH-hosted repository for genomic data called dbGAP. De-identified data means we will not publish your name or date of birth or any other personal identifiers. However, much like a fingerprint, your genome is unique to you, and it is possible you could be identified by your genomic data.
Can I choose not to make my data public?
No, all data collected via this study will be made public with the objective of furthering the goals of personalized and predictive medicine. If you do not wish to make your data public, do not enroll in this study.
What will happen to my samples after I participate?
Your samples will be kept for future studies if you give your permission. They will be identified with your participant ID but no personal identifiers. If you do not give your permission for your sample to be kept for future studies, it will be destroyed upon the completion of this study.
Why do you ask if I’m going to attend the Taipei HUPO meeting? Can I still participate if I say no?
Yes, you can participate even if you are not attending the HUPO meeting in Taipei.
I’d like to participate, but don’t know if I’ll be able to provide a stool sample. Can I still participate?
Absolutely. Some things in life are not predictable! If you are able to provide a stool sample, we would be grateful.
Will I get any data back about myself?
We are not able to return any individual data from this study. The only exception would be in the unlikely event that we find something in your data that could be life-threatenting and for which treatment or preventative measures are available. An example would be if we find a genetic mutation that confers a very high risk for developing cancer. You may opt out of receiving this type of information. Please note that looking for this type of information is NOT the primary objective of this study. Participating in this study is not a way of ruling out that you have a genetic mutation that could be disease-causing. If you have a concern about a potential genetic condition in you or your family, you should contact your physician and pursue genetic testing in a clinical setting.
