One of the most controversial and loosely defined laws is the HIPAA, which gives a base on who should receive a patient’s medical history and under what circumstances. Thus, many people are faced with making a difficult decision: Is it in best interest of the patient to disclose a diagnosis? This is the case with Jonathan, aged 50, who has been diagnosed with Huntington’s Disease. His genetic counselor, Karen, wants to disclose his diagnosis to his young adult daughter, Sarah, who is 25.
Jonathan, however, refuses to allow Sarah to know about the diagnosis.Huntington’s Disease (HD) is a degenerative disease of the brain during a time when the person is in prime condition. It is fatal and has no cure. Symptoms of this disease include personality changes, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, significant weight loss, and difficulty in swallowing. On average, this disease lasts ten to twenty years after symptoms begin.
The decision to test for Huntington’s Disease or not is extremely personal, as there is no cure.
Since it is a degenerative disease, genetic counselors have to decide if it is in the best interest of everybody to get immediate relatives tested for Huntington’s Disease. However, if they believe it so, they have to abide by the laws of HIPAA. The HIPAA, Health Insurance Portability and Accountability Act, states that certain figures with medical authority cannot disclose a patient’s medical diagnosis to anybody a patient explicitly advises against. This includes Karen, a genetic counselor.
Jonathan refused his diagnosis to be told to his daughter, so this poses a problem. Additionally, the genetic counselor is responsible for educating individuals and families about the disease and clarifying options available.
Jonathan does not want Sarah to know about his diagnosis. This can be for any number of reasons including the will to protect her since it is a genetic disease or to save her from mourning him. Karen’s argument, on the other hand, is to inform Sarah. Because HD is a degenerative disease over the course of 10 to 20 years, Jonathan would likely find this ineffective, due to the extended time span of this disease at the end of his life. In any case, there are good thoughts behind his decision; one likely just wants to save his daughter from worrying, while the other has the same goal, just doing it a different way. On the topic of goals, both of them likely just want to make this the most painless process they can. Both of them want to save Jonathan’s daughter from facing a difficult decision. While Karen encourages it, Jonathan has the right to refuse disclosure of his diagnosis to Sarah. As a result, Karen cannot tell Sarah about his condition under the HIPAA. That doesn’t mean that Karen has her hands completely tied.
Something that Karen can do without breaking the law is obtain the medical history of Jonathan’s likely deceased parents. Since HD results from a dominant gene, it typically does not skip generations. She can make the argument that it is likely that Sara has the disorder, especially if her grandparents had it. Safety measures are made all the time in medicine practices, and Karen can say that it is simply a safety measure. Another solution is for Karen to wait until she judges Jonathan as no longer capable of difficult decision making. Even now, in his early stage of HD, he likely has trouble with critical thinking, as this is the stage when most are diagnosed. The HIPAA states that certified individuals cannot disclose medical information until he or she judges the patient to be incapable of making decisions, or the person in charge of the patient gives permission. It will be very soon before this stage of HD is prevalent.
Overall, I feel that the best decision would be to strongly recommend Sarah to get a test for HD. Karen can tell her that it is just for safety measures and would not have to disclose Jonathan’s information, while getting quicker results than waiting for Jonathan to give permission. Additionally, the HIPAA would allow this to happen, as the grandparent with HD is likely deceased, therefore incapable of making the decision, and Karen would not have to disclose direct information about Jonathan’s diagnosis.This is a very difficult question to solve and the answer relies on personal preference, but this is the best solution from a objective standpoint.