Attitudes toward the right to autonomous decision‐making in psychiatric genetic testing: Controversial and context‐dependent. Issue 8 (26th March 2019)

• Record Type: Journal Article
• Authors: Strohmaier, Jana; Witt, Stephanie H.; Frank, Josef; Lemme, Noemi; Flatau, Laura; Streit, Fabian; Foo, Jerome C.; Reitt, Markus; Rujescu, Dan; Schulze, Thomas G.; Lanzerath, Dirk; Illes, Franciska; Degenhardt, Franziska; Rietschel, Marcella
• Is Part Of: American journal of medical genetics. Volume 180:Issue 8(2019)
• Page Start: 555
• Page End: 565
• Publication Date: 2019-03-26
• Subjects: ambivalence -- privacy -- psychiatric genetic testing -- right to self‐determination; Neuropsychiatry -- Periodicals; Medical genetics -- Periodicals; 616.8904205
• DOI: 10.1002/ajmg.b.32724
• Languages: English
• ISSNs: 1552-4841

Abstract

Abstract : Recent breakthroughs in psychiatric genetics have identified genetic risk factors of yet unknown clinical value. A main ethical principal in the context of psychiatric research as well as future clinical genetic testing is the respect for a person's autonomy to decide whether to undergo genetic testing, and whom to grant access to genetic data. However, experience within the psychiatric genetic research setting has indicated controversies surrounding attitudes toward this ethical principal. This study aimed to explore attitudes concerning the right of individuals to self‐determine testing and disclosure of results, and to determine whether these attitudes are context‐dependent, that is, not directly related to the test result but rather to specific circumstances. N = 160 individuals with major depression or bipolar disorder and n = 29 relatives of individuals with either illness completed an online‐questionnaire assessing attitudes toward genetic testing, genetic research, disclosure of results, incidental findings, and access to psychiatric genetic test results. Generally, the right of the person's autonomy was considered very important, but attitudes varied. For example, half of those who considered that children should have the right to refuse psychiatric genetic testing even against their parents' will, also state that they should be tested upon their parents' wishes. Also, the majority of respondents considered the physician entitled to disregard their stated wishes concerning the disclosure of incidental findings in case of good treatment options. Thus, researchers and clinicians must be aware that attitudes toward psychiatric genetic testing are often mutable and should discuss these prior to testing.