|
|
The Right Not To Know In The Field Of Genetic Applications
Zehra EDİSAN,a Şahin AKSOYb
aSerbest, ANKARA
bDeontoloji ve Tıp Tarihi ABD, Harran Üniversitesi Tıp Fakültesi, ŞANLIURFA
When it comes to being tested for a genetic predisposition to diseases that have no real cure and whose date of onset cannot be predicted, there are basically two types of people; “one-want-to-know” and “one-avoid-knowing”. Some people express the wish not to know, and this, today, is considered as a right. The right not to know and with this, remaining uncertainty of the personal destiny is a lawful right. This right comes out of the basic rights from being human, especially from the right to develop personality freely. Genetic testing is increasingly being used in the investigation of familial disorders. While some people undergo genetic screening simply to know their predisposition to a particular disease; others want to be sure that they are far off that predisposition. Huntington's is a genetic disease, that can be passed down from parents to children. The test for Huntington's disease can confirm a mutation in the Huntington's gene, but it offers no treatment for the devastating symptoms. The result is a therapeutic rift between what we know and what we can do. The question is; when we cannot intervene, how do we handle diagnostic information in the absence of a cure? Therefore individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences. Some may prefer to live without the anxiety of knowing that they are at risk of a genetic disease. It is widely accepted that a person should have a right, not to know, which should also be respected.Keywords: Human rights; genetic privacy; patient rights; ethics, medicalTurkiye Klinikleri J Med Ethics 2007, 15:153-159
|
|
|
|
|
