Attitudes toward the right to autonomous decision‐making in psychiatric genetic testing: Controversial and context‐dependent

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 selfdetermine 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.

Attitudes among parents of persons with autism spectrum disorder towards information about genetic risk and future health

“…In general psychiatry the majority of patients and parents have claimed full autonomy in receiving and sharing genetic risk information and full support of professional-patient confidentiality [ 24 , 25 ]. In the present study we focus on genetic testing in ASD.…”

Drama as a Powerful Tool to Enrich Socio-scientific Argumentation

“…It should be pointed out that this sequence is not a panacea to solve all obstacles to success in preparing students to make critical decisions about genetic testing. It is just one research-based contribution among many others that will be required to equip students with effective and pragmatic tools that enable them to deal critically with the current and complex tapestry of concerns of genetic testing, such as the introduction of genomic screening to detect a predisposition for cancer (Wedderburn & McVeigh, 2021 ), transparency, consent, and trust in the use of customers’ data by online genetic testing companies (Raz et al, 2020 ), the use of pre-implantation genetic testing for sex selection (Bracewell-Milnes et al, 2021 ), the balance between autonomy and responsibility to decide whether to undergo genetic testing (Nurmi et al, 2021 ; Strohmaier et al, 2019 ), the social influence of genetic testing decision-making (Zimmermann et al, 2021 ), conflicting emotions after knowing a person’s genetic status (Nurmi et al, 2021 ), and non-health-related uses of DTC genetic testing (e.g. investigative genetic genealogy) (Majumder et al, 2021 ).…”

“…Therefore, a drama-based TLS can be an authentic, pragmatic, and realistic way to foster SSA and thus contribute to moving from theory to practice in university science education. And third, our TLS centers on an issue which is relevant to undergraduates (Forbes Shepherd et al, 2021 ; Siani & Assaraf, 2015 , 2016 ), controversial (Strohmaier et al, 2019 ), and current (Bracewell-Milnes et al, 2021 ; Zimmermann et al, 2021 ), namely, genetic testing. There are few studies focusing on the promotion of argumentation in relation to this issue at tertiary level, despite the fact that several organizations maintain that today’s citizens need to develop critical views towards the economic, ethical, moral, political, and social factors involved in making decisions about genetic testing (Genetic Alliance, 2009 ; Organization for Economic and Cooperative Development [OECD], 2007 ; United Nations Educational, Scientific and Cultural Organization [UNESCO], 2005 ; World Health Organization [WHO], 2011 ).…”

“…At the heart of our drama-based TLS was the controversial question, “Should the use of genetic tests among people be encouraged?” This was chosen for a variety of reasons. These include (1) this question is widely recognized as a fundamental one within the current genetic testing controversy (Forbes Shepherd et al, 2021 ; Wedderburn & McVeigh, 2021 ); (2) the WHO ( 2011 ) insists that critical reflection on this question is indispensable to foster awareness of the importance of respecting the voluntary nature of genetic testing; (3) there are no clear-cut answers to this controversial question, but rather arguments in favor and against genetic testing (Majumder et al, 2021 ; Sharpe & Carter, 2006 ); and (4) Botkin et al ( 2015 ), Giarelli ( 2001 ), Nurmi et al ( 2021 ), and Strohmaier et al ( 2019 ) observe that a desirable decision-making process about this question requires the consideration of diverse aspects (e.g. economic, ethical, social) related to genetic testing.…”

The need for attention to the ethical, legal, and social implications of advances in psychiatric genomics

“…Strohmaier and colleagues () examine the attitudes of patients with a psychiatric disorder and their relatives concerning autonomous decision making for genetic testing. The findings stress the importance of being nuanced when evaluating preferences regarding whether to conduct genetic testing, return results, and disclose results to third parties.…”