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Monday, December 9, 2013
Liposarcoma and Gathering Genetic Information
I asked a question about Liposarcoma a while back. It was suggested I ask the genetic counselor that is doing the research on our family(since 1970). The problem is that since my brother died when he was 23(and was married, he was 14 when he was diagnosed)our family is not allowed any info at all unless we can locate his wife(she has remarried and we are unable to find her)to ask her for permission. Our concerns are our children and possible risks, plus several of us have weird health issues. The Health Insurance Portability and Accountability Act has made this impossible, so that was why I resorted to writing you. Thank you for what you do here as it is a great service.
I'm sorry that you have had such a difficult time getting information about your brother's liposarcoma. HIPAA (the Health Insurance Portability and Accountability Act) has many good points and many problems. Protection of privacy can be a very tricky issue, and one that many people debate on a daily basis.
As for additional information, you indicate that in addition to the liposarcoma, you have some concerns about other health issues in your family. Since this is a public forum, I do not encourage you to share this information publicly. However, it does sound like you would benefit from an opportunity to see if all the health concerns can be connected in some way. I encourage you to find a genetics center in your geographical area and discuss some of your concerns. It may turn out that there is no clearly identified cause to link all these findings together. But you may also learn that there are some changes in your medical care that might be beneficial.
To find a genetics center or a genetic counselor talk with your primary care physician or visit the website for the National Society of Genetic Counselors listed below. Please make sure you keep your regular physicians aware of your concerns. If there are any medical management issues, they will be the ones who will most likely be involved in making further referrals. I hope you are able to find answers to some of your questions.
Duane D Culler, PhD, MS
Clinical Instructor of Genetics
School of Medicine
Case Western Reserve University