SHOULD I AGREE TO PARTICIPATE IN THE BIOBANK ? If you choose to participate in the biobank , your blood sample will be coded and stored in the biobank , but your name will be removed from your blood sample , and the sample will be given a unique code . Blood samples stored in the biobank will enable researchers to conduct future scientific research on various health conditions , and that research may benefit you and others who have similar genetic features . Therefore , the AGHI research team considers the biobank to be a key research tool for future medical breakthroughs .
Respecting your decisions about participating in research is one of AGHI ’ s most important and cherished ethical principles . The decision whether to have your blood sample stored in the AGHI biobank is a personal one and will not affect your ability to participate in other aspects of this study . There are some potential factors that you may consider in making this decision , such as concerns about the privacy of your genetic information and the opportunity to contribute to medical / genetic research .
ARE THERE ANY LAWS PROTECTING ME FROM DISCRIMINATION BASED ON MY GENETIC INFORMATION ? There are some protections available to prevent genetic discrimination , but they have important limitations and may not prevent discrimination in all settings . The Genetic Information Nondiscrimination Act ( GINA ) is a federal law that was passed in 2008 to provide protection from discrimination in health insurance coverage or employment based on genetic information .
FREQUENTLY ASKED QUESTIONS FOR PATIENTS
First , GINA makes it illegal for a health insurance company to use a genetic test result or family health history as a reason to deny health insurance coverage or to decide how much you must pay for coverage . Secondly , GINA makes it illegal for an employer to use a genetic test result or family health history to make choices regarding your employment .
There are limitations to the protections GINA provides , however . GINA ’ s protections for insurance only apply to health insurance . They do not apply to life , long-term care , or disability insurance . Employment protections in GINA do not apply to small businesses / employers with fewer than 15 employees or to those in the U . S . military or employees of the federal government . Signed into law in 2000 , executive order 13145 protects federal employees from genetic discrimination in employment .
If you have concerns about genetic discrimination , you should discuss them with a genetic counselor or other health care provider before undergoing genetic testing , including the genetic testing offered by the AGHI .
WHAT ARE POSSIBLE REASONS THAT THE AGHI RESEARCH TEAM WOULD RE-CONTACT ME ? The AGHI research team may re-contact you for a number of reasons . We may re-contact you to inform you of significant new findings about your health condition or to ask for feedback about your experience enrolling in AGHI . We may also contact you to request fresh blood samples or to inform you of similar research studies that may be of interest to you . You do not have to give us more blood or medical information in the future . Providing information or blood samples to the AGHI or any other study in the future is your decision .
To learn more about the AGHI , please email aghi @ uab . edu or visit aghi . org . aghi . org 27