My stance on this subject is that Gene Therapy should not be covered under medical insurance. I think this because there are certain liabilities that come with replacing malfunctioned DNA with good DNA. The DNA can be placed in the wrong location, activate the wrong proteins or systems, or cause cancer by cell rejection. The benefits are numerous for gene therapy but insurance companies have to have a safety line. If a person dies by receiving medical care should the company have to give money for a mistake? I think it"s rather the opposite. If an affected person is in need of gene therapy than a fundraiser or out of pocket should be used because this extinguishes any liability by insurance or other money lending company.
I am of the opinion that it should be covered by Medical Insurance or at least the very best (gold standard) medical insurance depending on its cost. As its cost goes down, it can be covered by more mainstream insurance plans. It may be risky but so are a lot of other medical procedures. For example heart transplants carry some risk of death and if the transplant fails, the family is not given compensation if there is no evidence of malpractice. Before gene therapy operations the patient should fill a consent form, be made aware of the risks, and understand that the hospital is not liable if the patient dies when there is no malpractice.
The cost of this therapy is in the millions so out of pocket would not be practical for the non-super rich (1). A heart transplant in comparison is about 1.2 million. Putting the procedure on insurance will make it available to a wider group of people. I doubt that fund raisers will work because each transplant is in the millions. We will be able to do more of these transplant if they are paid for through insurance.