A comparison of genome cohort participants’ genetic knowledge and preferences to receive genetic results before and after a genetics workshop

Yamamoto, Kayono; Shimizu, Atsushi; Aizawa, Fumie; Kawame, Hiroshi; Tokutomi, Tomoharu; Fukushima, Akimune

doi:10.1038/s10038-018-0494-z

Cited by 15 publications

(12 citation statements)

References 14 publications

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“…In a sample of individuals diagnosed with major depression, bipolar disorder, schizophrenia, or anxiety disorder, more participants were interested in psychiatric genetic testing if effective treatment existed (Laegsgaard et al, 2009). This finding parallels results from other studies focused on common diseases (Murphy et al, 2008;Yamamoto et al, 2018) which show that most people are more interested in receiving genetic feedback for treatable or actionable conditions and less interested in feedback for conditions where there were no prevention or treatment programs (Murphy et al, 2008).…”

Section: Effective Treatment For Conditionsupporting

confidence: 72%

Genetic feedback for psychiatric conditions: Where are we now and where are we going

Driver

Kuo

Dick

2020

American J of Med Genetics Pt B

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Genome‐wide association studies are rapidly advancing our understanding of the genetic architecture of complex disorders, including many psychiatric conditions such as major depression, schizophrenia, and substance use disorders. One common goal of genome‐wide association studies is to use findings for enhanced clinical prediction in the future, which can aid in identifying at‐risk individuals to enable more effective prevention screening and treatment strategies. In order to achieve this goal, we first need to gain a better understanding of the issues surrounding the return of complex genetic results. In this article, we summarize the current literature on: (a) genetic literacy in the general population, (b) the public's interest in receiving genetic test results for psychiatric conditions, (c) how individuals react to and interpret their genotypic information for specific psychiatric conditions, and (d) gaps in our knowledge that will be critical to address as we move toward returning genotypic information for psychiatric conditions in both research and clinical settings. By reviewing extant studies, we aim to increase awareness of the potential benefits and consequences of returning genotypic information for psychiatric conditions.

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Section: Effective Treatment For Conditionsupporting

confidence: 72%

Genetic feedback for psychiatric conditions: Where are we now and where are we going

Driver

Kuo

Dick

2020

American J of Med Genetics Pt B

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“…Interest was highest for diseases that could be modified by lifestyle, as well as adult-onset and actionable conditions, with much less interest expressed in receiving pharmacogenetics and adult-onset non-actionable results [ 41 ]. Yet, a second Japanese study conducted an educational workshop with 112 participants and showed that scores for interest in receiving five categories of results–lifestyle diseases, pharmacogenetics, adult-onset non-clinically actionable diseases, non-clinically actionable multifactorial diseases, and all genetic information–significantly decreased after the workshop [ 114 ]. However, even in the face of this decrease, over 95% still wanted to know results for the diseases that could be influenced by lifestyle, pharmacogenetics, and adult-onset clinically actionable diseases [ 114 ].…”

Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

“…Yet, a second Japanese study conducted an educational workshop with 112 participants and showed that scores for interest in receiving five categories of results–lifestyle diseases, pharmacogenetics, adult-onset non-clinically actionable diseases, non-clinically actionable multifactorial diseases, and all genetic information–significantly decreased after the workshop [ 114 ]. However, even in the face of this decrease, over 95% still wanted to know results for the diseases that could be influenced by lifestyle, pharmacogenetics, and adult-onset clinically actionable diseases [ 114 ]. In addition, 17 parents of healthy children participating in a biobank wanted to know both childhood- and adult-onset medically actionable conditions for their child and felt it was more important to protect their child’s health than preserve their future autonomy [ 115 ].…”

Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

et al. 2021

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Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders’ perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.

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“…The findings of our study suggest the importance of utilizing approaches to enhance familiarity with genetics/ genomics and address various privacy concerns to improve mothers' acceptance of genetic analysis. Educational activities such as workshops may be effective in increasing participants' understanding [35]. However, face-to-face recontact with participants is quite difficult in a longitudinal large-scale cohort study.…”

Section: Discussionmentioning

confidence: 99%

Participant mothers’ attitudes toward genetic analysis in a birth cohort study

et al. 2021

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To conduct a long-term birth cohort study that includes genetic analysis, it is crucial to understand the attitudes of participants to genetic analysis and then take appropriate approaches for addressing their ambiguous and negative attitudes. This study aimed to explore participants’ attitudes toward genetic analysis and associated background factors among mothers who were enrolled in a large Japanese birth cohort. A questionnaire was sent to participants’ households, and the responses of 1762 mothers (34.0%) were used for the study. The majority of mothers recognized genetic analysis for themselves and their children and sharing of genetic data as beneficial. A low knowledge level of genomic terminology was associated with ambiguous attitudes toward genetic analysis and data sharing. Education level was positively associated with the recognition of the benefits of genetic analysis. Concern about handling genetic information was associated with the unacceptability of data sharing. Trust was associated with the approval of genetic analysis. Most mothers preferred that genetic analysis results be returned. These findings suggest the need for multiple efforts to maximize participants’ acceptance of genetic analysis, such as utilizing an educational approach to encourage familiarity with genetics/genomics, optimizing explanations for different educational levels, and explicitly disclosing the handling policy for genetic information.

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A comparison of genome cohort participants’ genetic knowledge and preferences to receive genetic results before and after a genetics workshop

Cited by 15 publications

References 14 publications

Genetic feedback for psychiatric conditions: Where are we now and where are we going

Genetic feedback for psychiatric conditions: Where are we now and where are we going

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

Participant mothers’ attitudes toward genetic analysis in a birth cohort study

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