Frequently Asked Questions about Taking Part in Research
1. Does everyone in my family need to take part?
No. While it is helpful to have as many individuals from the same family as possible, taking part in research is an individual decision and completely voluntary. We would prefer at least one member of the family who has experienced aortic disease to be a part of the study so that we can study his/her DNA for genes that cause aortic disease.
2. What if the people with aortic disease in my family have passed away?
We still welcome families to take part in research even if the individuals in the family with aortic disease are deceased. Surgical specimens and medical records are stored for individuals long after they have died and in most cases, can be obtained. In addition, children, siblings, and parents of deceased individuals share DNA with other family members and can be used to help find out the gene involved
3. Will my identity be kept confidential?
All of our research is conducted under the strictest confidentiality. The information and samples of those taking part are identified in research records by a code number. All samples are stored and studied according to the code number and only a few authorized personnel in the research team will know your name. You will not be personally identified in any reports or publications that may result from this study. However, there is a very slight risk that in spite of confidentiality precautions, your genetic information might be inadvertently disclosed to unauthorized third parties.
4. Can my children participate?
Yes, children may take part in the study. Children under the age of 18 will need to give assent to take part in our research as well as the permission of a parent or guardian to take part.
5. Will I receive results from any genetic testing done as part of the research study?
If the genetic mutation causing a predisposition to aortic aneurysms and/or dissections in your family is identified, we will notify you by telephone or mail. Genetic counseling will be provided to you and your family members free of charge to explain these results. The results will be provided to you and any physician you authorize to receive your results as research results and should not be used for making clinical decisions until they have been confirmed by a clinical (CLIA-approved) laboratory. We will provide you with the information to have your results confirmed by a clinical laboratory.
6. Do I have to travel to Houston or make an appointment to take part?
No. You can take part in research without leaving your home. Learning about the study and consenting to take part in the study can be done over the telephone with one of our genetic counselors. Sample kits will be mailed to your home, along with a prepaid return envelope. You will not need to make an appointment of any kind to take part.
7. Does it cost anything to take part?
No. It does not cost anything to take part in our research studies, nor are individuals paid for taking part.
8. Will you find the gene that is causing aortic dissections to run in my family?
We may not identify the gene causing aortic disease in your family. We currently know the genes that cause aortic dissections in 20%, or 1 out of 5 families. That means for the other 80%, or 4 out of 5 families, we are still working to identify the genes that cause aortic disease in these families. It is through research in families with aortic aneurysms and dissections that we can identify more genes and be able to provide information to individuals and families in the future.