Dataset Information

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 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.

SUBMITTER: Strohmaier J

PROVIDER: S-EPMC6899643 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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

Strohmaier Jana J Witt Stephanie H SH Frank Josef J Lemme Noemi N Flatau Laura L Streit Fabian F Foo Jerome C JC Reitt Markus M Rujescu Dan D Schulze Thomas G TG Lanzerath Dirk D Illes Franciska F Degenhardt Franziska F Rietschel Marcella M

American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics 20190326 8

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 ...[more]

PMID: 30912305

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Project description:INTRODUCTION:It is increasingly considered important that people make an autonomous and informed decision concerning colorectal cancer (CRC) screening. However, the realisation of autonomy within the concept of informed decision-making might be interpreted too narrowly. Additionally, relatively little is known about what the eligible population believes to be a 'good' screening decision. Therefore, we aimed to explore how the concepts of autonomous and informed decision-making relate to how the eligible CRC screening population makes their decision and when they believe to have made a 'good' screening decision. METHODS:We conducted 27 semi-structured interviews with the eligible CRC screening population (eighteen CRC screening participants and nine non-participants). The general topics discussed concerned how people made their CRC screening decision, how they experienced making this decision and when they considered they had made a 'good' decision. RESULTS:Most interviewees viewed a 'good' CRC screening decision as one based on both reasoning and feeling/intuition, and that is made freely. However, many CRC screening non-participants experienced a certain social pressure to participate. All CRC screening non-participants viewed making an informed decision as essential. This appeared to be the case to a lesser extent for CRC screening participants. For most, experiences and values were involved in their decision-making. CONCLUSION:Our sample of the eligible CRC screening population viewed aspects related to the concepts of autonomous and informed decision-making as important for making a 'good' CRC screening decision. However, in particular the existence of a social norm may be affecting a true autonomous decision-making process. Additionally, the present concept of informed decision-making with its strong emphasis on making a fully informed and well-considered decision does not appear to be entirely reflective of the process in practice. More efforts could be made to attune to the diverse values and factors that are involved in deciding about CRC screening participation.

Project description:BackgroundDecisions about appropriate treatment at the end of life are common in modern healthcare. Non-treatment decisions (NTDs), comprising both withdrawal and withholding of (potentially) life-prolonging treatment are in principle accepted in Norway. However, in practice they may give rise to significant moral problems for health professionals, patients and next of kin. Here, patient values must be considered. It is relevant to study the moral views and intuitions of the general population on NTDs and special areas of contention such as the role of next of kin in decision-making.MethodsElectronic survey to members of a nationally representative panel of Norwegian adults. Respondents were presented with vignettes describing patients with disorders of consciousness, dementia, and cancer where patient preferences varied. Respondents answered ten questions about the acceptability of non-treatment decision making and the role of next of kin.ResultsWe received 1035 complete responses (response rate 40.7%). A large majority, 88%, supported the right of competent patients to refuse treatment in general. When an NTD was in line with the patient's previously expressed preferences, more respondents tended to find NTDs acceptable. More respondents would accept NTDs for themselves than for the vignette patients. In a scenario with an incompetent patient, clear majorities wanted the views of next of kin to be given some but not decisive weight, and more weight if concordant with the patient's wishes. There were, however, large variations in the respondents' views.ConclusionThis survey of a representative sample of the Norwegian adult population indicates that attitudes to NTDs are often in line with national laws and guidelines. However, the high variance among the respondents and relatively large weight given to next of kin's views, indicate a need for appropriate dialogue among all stakeholders to prevent conflicts and extra burdens. Furthermore, the emphasis given to previously expressed opinions indicates that advance care planning may increase the legitimacy of NTDs and prevent challenging decision-making processes.

Project description:BACKGROUND:Our study examined the use of decision-making styles, as identified by Scott and Bruce (1995) (i.e. differentiating between a rational, intuitive, dependent, avoidant and spontaneous decision-making style), within the context of colorectal cancer (CRC) screening participation. In the field of cancer screening, informed decision-making is considered important, which follows the Rational Decision model. Subsequently, gaining more insight into decision-making styles being used in real life, could improve support to people when making their screening decision. In addition, we examined whether the decision-making style that people used was associated with their experienced decisional conflict. METHODS:An online survey was carried out among a sample of first-time CRC screening invitees (1282 respondents, response rate 49%). We assessed people's decision-making styles, CRC screening participation, education level, self-reported health literacy, and decisional conflict, and examined the possible associations between them. RESULTS:In our study, people who had to decide about CRC screening scored high on using both a rational and intuitive decision-making style. Respondents scoring higher on using a spontaneous or dependent decision-making style were more likely to have participated in CRC screening, while respondents scoring higher on using an avoidant decision-making style were more likely not to have participated in CRC screening. However, differences were small. Generally, people in our study experienced low decisional conflict. CONCLUSION:Our eligible CRC screening population scored high on using both a rational and intuitive decision-making style. To optimise support to people, public education materials could be appealing more to the intuitive processes at hand. That being said, the current education materials aimed at informed/rational decision-making do not necessarily seem to create a problem, as people generally experienced low decisional conflict. Possible concerns regarding the use of a spontaneous, dependent or avoidant decision-making style could be that these styles might be contributing to less informed decisions. However, it is relevant to consider that the found differences are small and that any possible concern applies to a relatively small group of people.

Dataset Information

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

Publications

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

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