CUB: Frequently Asked Questions

The research we do through the Columbia University Biobank has the potential to benefit many people as it will help us better understand various diseases and advance science as a whole.

The CUB is open to all patients of Columbia/NYP.

In order to ensure that results from research studies that the CUB supports can be used to improve the health of diverse patient populations, the CUB is committed to enrolling patients from all ethnic, racial, and cultural backgrounds. We also welcome patients with all types of health conditions, as well as those who do not have any health conditions.

Participation is completely voluntary and involves just a few steps:

1. Review and sign the CUB consent form.
2. Donate your samples.
3. You may be asked to complete a brief survey about your health history and lifestyle.

We will attempt to draw blood and collect urine from each participant. When at all possible, we will try to obtain the blood sample during your routine lab work at an upcoming medical appointment. Buccal (cheek) swabs and saliva kits will be offered as a last resort for any patient who would like to participate in the biobank but is unable/unwilling to provide a blood sample.

Your samples will be stored indefinitely. Studies can often take many years to complete, so you may not receive information about how the samples and health data you donated to the Columbia University Biobank have been used. Even if you never hear from us, please know that your participation in the Columbia University Biobank will help us develop life-saving medical advances that can improve the health of generations to come

Your samples may be used in multiple research studies, and DNA from your blood/saliva/or tissue sample may be tested to look for genes and DNA related to health conditions. If genetic data is generated from your samples, this will also be made available to approved researchers to use.

Researchers who want to access the samples and data stored in the biobank must apply to use the information. A multi-disciplinary committee comprised of researchers and physicians from the medical center will review all requests to use the samples and data available in the biobank.

We will only share information that identifies you with approved researchers within Columbia/NYP. We will not share information that identifies you with researchers outside Columbia/NYP.

Generally, we will not return individual results from research using your samples and data to you. Most research findings are not relevant to your personal health; however, in the future, this may change. While you should not expect to receive results from participation in the biobank, if the researchers involved in the biobank determine that results are of high medical importance to you, we will attempt to contact you.

No. Your decision to participate in the Columbia University Biobank does not have any impact on continuing to receive care at CUIMC/NYP. You may continue to see your same providers and receive treatment even if you choose to decline participation in the Columbia University Biobank.

You will receive a $20 gift card for participating in the Columbia University Biobank. You will not be paid if any new products, tests or discoveries result from any research involving your samples.

The physical risks of participating in the Columbia University Biobank and donating your biological samples are similar to what might occur from a routine blood draw that you get for your doctor. There is also a small risk of potential loss of privacy and breach of confidentiality. We protect your privacy by coding your samples and health information. Despite our best effort, unexpected situations could occur.

We may identify risk for serious genetic conditions. Such a finding can result in unexpected psychological trauma for both you and your family. The detection of such a condition could also affect the health care needs of your siblings, children or other close relatives. Genetic Information Nondiscrimination Act (GINA) is a law that protects you from genetic discrimination by health insurance companies and employers. Participating in this research should not affect your health insurance coverage.

Patient privacy is very important to us, and we take several steps to ensure that patient information remains confidential. Your data and specimens will be given a code number, and separated from your name or any other information that could identify you. Coded samples and data may be shared with researchers at other nonprofits or with for-profit companies that are working with Columbia researchers, but no information that could identify a patient will be shared outside Columbia/NYP.

We will only share information that may identify a patient with approved researchers within Columbia/NYP.

To help us protect your privacy, we received a Certificate of Confidentiality from the National Institutes of Health (NIH). With this Certificate, we cannot be forced to provide information that may identify you, even by a court subpoena, in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings. We will use the Certificate to resist any demands for information that would identify you, except as explained below.

The Certificate of Confidentiality does not stop you or a member of your family from telling others about yourself or your involvement in this research. If an insurer, employer, or other person gets your written consent to receive research information, then we cannot use the Certificate to withhold that information.

The biobank is a resource meant to serve the research community for years, and there are no plans for it to end. However, you have the right to leave the biobank at any time. Your choice will not involve any penalty or loss of benefits.

When leaving the biobank, please note:

• You cannot withdraw your samples and information from studies that have been started;

• Biobank staff cannot get back samples or medical information that have been shared with other research institutions; and

• Biobank staff will stop using your medical information and destroy any remaining samples if you ask us to, but we will not be able to remove existing information from our databases.

You may withdraw this consent and authorization at any time and for any reason by emailing biobank staff at CUBiobank@cumc.columbia.edu or calling (212) 305 9941.

Please email CUBiobank@cumc.columbia.edu or call (212) 305 9941 for more information.