FREQUENTLY ASKED QUESTIONS FOR PATIENTS
FREQUENTLY ASKED QUESTIONS FOR PATIENTS
WHAT IS THE CHANCE I WILL HAVE A GENETIC DISEASE RISK IDENTIFIED ? Studies show that about 1-2 % of people in the general population have a change in one of the disease risk genes included on the AGHI test . We expect that most patients will receive a negative disease risk result , with no disease-causing gene changes found .
IF THE RESULTS DO NOT FIND THAT I HAVE AN INCREASED RISK FOR ANY GENETIC DISEASE , DOES THIS MEAN THAT I CAN ’ T DEVELOP ANY OF THE CONDITIONS TESTED ? No . The AGHI test is a “ screening test ” that searches for major , well-understood changes in the group of genes being tested . It does not detect all possible types of genetic changes in these genes , and it does not test all genes associated with genetic conditions – including some that are associated with heart disease or cancer .
IF YOU HAVE A KNOWN RISK FOR A GENETIC CONDITION – DUE TO A PERSONAL OR FAMILY HISTORY OF DISEASE , FOR EXAMPLE – THEN AGHI TESTING SHOULD NOT BE USED AS A SUBSTITUTE FOR ROUTINE CLINICAL GENETIC TESTING . CLINICAL GENETIC TESTING IS MORE THOROUGH THAN THE TESTING PROVIDED BY AGHI .
WHAT IS THE CHANCE I WILL HAVE A PHARMACOGENETIC VARIANT IDENTIFIED ? Studies show that over 95 % of people have a genetic change that will affect how they respond to medications . We expect that most patients will have at least one pharmacogenetic change that may affect your current or future medications .
WHAT SHOULD I DO IF I FIND OUT THAT I HAVE A PHARMACOGENETIC CHANGE THAT AFFECTS A MEDICATION I AM TAKING ? Do NOT stop taking or change the dose of any of your medications based on your test results . Many factors ( other than your genes ) play a role in how you respond to medications . Even if you have a genetic change that affects a medication , in many cases you can still take the medication . Sometimes you may need a higher or lower dose , or your doctor may want to monitor you more closely . That is why it is important not to stop taking any medications based on this report . YOUR DOCTOR CAN WEIGH ALL OF THESE FACTORS AND ADJUST YOUR MEDICATIONS , IF NEEDED .
IS PHARMACOGENETIC TESTING USEFUL EVEN IF I AM NOT CURRENTLY TAKING PRESCRIPTION MEDICATIONS ? Yes . Pharmacogenetic information can help your doctors choose medicines for you in the future . You should keep a copy of your AGHI results and share them with any doctors you see , now and in the future .
IF MY GENETIC TESTING IS POSITIVE , DOES THIS MEAN THAT OTHER MEMBERS OF MY FAMILY ALSO MIGHT BE AT RISK ? Yes , other family members also may carry the genetic difference and therefore could be at risk . This may include your parents , siblings , children , and perhaps other more distant relatives . When the result is returned to you , a genetic counselor will speak with you about options to have other family members tested , though this testing would not be done free of charge through AGHI .
WHERE WILL MY TEST RESULTS BE STORED , AND WILL ANYONE OTHER THAN MY DOCTORS BE ABLE TO ACCESS MY PRIVATE GENETIC INFORMATION ? Your genetic disease risk results and pharmacogenomic results will be sent to both you AND your medical provider , so that you and your doctor can discuss the results . These genetic results will be stored in your medical record , but no identifiable genetic information will be disclosed to people outside of your health care team . Information shared with people outside your health care team will NOT include your name , medical record number , or any information that identifies you . After your results are returned to you , if you choose to participate in the biobank and future research , all personal identifiers are stripped from your data . So , genetic or pharmacogenetic information about you can be used for various research purposes , but your identity is kept confidential and will not be known to outside researchers without your consent .
26 Alabama Genomic Health Initiative Annual Report 2021