How will you keep my/my child’s information safe?

Information security is of the utmost importance to us. We are trained to handle sensitive health information and strictly follow HIPPA guidelines. When we collect your sample and data, we make sure that it is all coded with a unique study ID that cannot be used to identify you. Any physical records are kept in a locked file cabinet within a locked office. Electronic records are password-protected and stored on a server behind an institutional firewall. Only key personnel are allowed to access these records. Of course, you maintain control of your data, so if you would like it reported to your doctor, or if you would like it erased at any time, we can do that for you.

What are the benefits of the Texome Project?

The Texome Project gives the opportunity to use genetic information to find answers about unexplained and/or undiagnosed disease. We will walk with you for at least 2 years as we try to understand the cause of health issues using genomic technologies.

Should I worry about my ability to receive insurance coverage in the future?

Federal law protects you from discrimination based on genetic information through the Genetic Information Non-Discrimination Act (GINA). This law prohibits employers and health insurance providers from treating you differently based on your genetics and makes it illegal for employers and health insurance providers from requiring you to submit your genetic information. However, there are a few exceptions such as life insurance providers and the US Department of Defense.

English Resource: http://www.ginahelp.org/GINAhelp.pdf

Spanish Resource: https://www.eeoc.gov/es/laws/guidance/hoja-informativa-ley-de-no-discriminacion-por-informacion-genetica

Is this genetic test like 23&Me or Ancestry.com?

The Texome Project provides whole exome sequencing (WES) which is a clinical grade, broad genetic analysis that gives high-quality information to doctors which they can use to attempt to find the cause of a disease. Direct-to-consumer tests (such as 23&Me or Ancestry.com) are not as helpful to doctors since they only look at a very small part of your genetic makeup.

What will the Texome Project do with my/my child’s sample?

The Texome Project has a partnership with Baylor Genetics. We send your blood/buccal(cheek swab) samples from you and your child for them to complete whole exome sequencing. Then we will receive the results back, analyze them and schedule a consultation to go over the results with you and possible next steps. Baylor Genetics is Clinical Laboratory Improvement Amendments (CLIA) certified and accredited by the College of American Pathologists (CAP) to perform genetic testing for the purposes of this study.

What kind of genetic analysis is done with my sample?

We perform trio whole exome sequencing (WES). This means that we collect a sample from the patient and each parent if available and look at all of the parts of the genome that we know to have key information encode.