I recieved a letter from Mayo Clinic in reference to Andrew and genetic testing. (We currently go to Children's Heart Clinic in Minneapolis, but we used to go to Mayo and he had his myectomy there.) Here is most of the letter:
Can someone explain in simple terms what this means? Does this mean they could test myself and our oldest son to see if we are carrying the HCM gene? If so, I see no sense in it for me, as I feel it is evident that I do carry it, as well as my brother, since we both had children with active HCM. But would this be beneficial for my 20 year old son to be tested?
I think I understand this to mean even if shown to have the gene it does not mean HCM will ever become active. Is that right? And if that is the case it may actually work against him since he will be going off our insurance next year and need to find his own. It would not be good to have that in his medical records!
What do you all think?
Previously you kindly provided written consent for use of a blood and/or tissue specimen authorizing research to study genes that are involved in HCM. The consent form stated the following:
If a disease causing genetic defect is identified in a family, this research finding becomes important in the clinical care of the family. In clinical practice, establishing the genetic subtrate helps direct medical therapy and importantly identifies potentially at risk family members.
Therefore, if a defect is found in you, you will be provided an opportunity to have a genetic counseling session to discuss the pros and cons of learning your genetic test result. You may choose not to learn the nature of your genetic defect. In this case there would be no charge for the consultation and no genetic information would be placed in your medical records.
However if you choose to have your defect disclosed, this session would be considered a clinically relevant consultation and standard professional consultation fees would be billed. In addition, the specific genetic defect identified would be documented in your medical records.
At this point, we have identified your family’s HCM-associated genetic variant. The decision to learn one’s genetic test result is a difficult one………..<snip>
If a disease causing genetic defect is identified in a family, this research finding becomes important in the clinical care of the family. In clinical practice, establishing the genetic subtrate helps direct medical therapy and importantly identifies potentially at risk family members.
Therefore, if a defect is found in you, you will be provided an opportunity to have a genetic counseling session to discuss the pros and cons of learning your genetic test result. You may choose not to learn the nature of your genetic defect. In this case there would be no charge for the consultation and no genetic information would be placed in your medical records.
However if you choose to have your defect disclosed, this session would be considered a clinically relevant consultation and standard professional consultation fees would be billed. In addition, the specific genetic defect identified would be documented in your medical records.
At this point, we have identified your family’s HCM-associated genetic variant. The decision to learn one’s genetic test result is a difficult one………..<snip>
I think I understand this to mean even if shown to have the gene it does not mean HCM will ever become active. Is that right? And if that is the case it may actually work against him since he will be going off our insurance next year and need to find his own. It would not be good to have that in his medical records!
What do you all think?
Comment