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Informed Consent in Genetic Research on Mental Disorders

Dr. Aylin ULUŞAHİN, Dr. Suzan KARA ÖZER, Dr. A. Nurten AKARSU, Dr. Erdem AYDIN
2001 12(1): 53-59
DOI:
[Geri]        [Özet]    [Yazara Mail]
İNGİLİZCE ÖZET

Although the practice in the field of psychiatric genetics is only in the early stages of development, advances in molecular biology have led to research on the genetics of psychiatric disorders. The number of studies in which molecular biological techniques are used has increased in Turkey as well as in the rest of the world in recent years. Genetic research differs from other areas of research in three respects: i. it involves information about more than one generation; ii. unintentionally obtained information such as paternity can be provided by genetic testing; and iii. problems due to prenatal and presymptomatic diagnosis may occur. For these reasons and as genetic research on mental disorders requires the collaboration between researchers from different disciplines and several centers, the ethical codes in this area should be carefully determined. The aim of this study is to review the major ethical considerations of this subject. In this regard, “respect for the autonomy of the patient” and informed consent, which is the major reflection of this issue on clinical practice, are discussed. The implications of genetic counseling on the informed consent are reviewed. Three major foci of genetic counseling are examined: the right to know/right not to know the results of genetic testing; the privacy of genetic information; and who should provide genetic counseling. For the standardization of genetic research which will be performed in different centers in Turkey, a proposal for an informed consent form specifically for that purpose is presented.