Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge

Lázaro‐Muñoz, Gabriel; Torgerson, Laura; Pereira, Stacey

doi:10.1038/s41436-020-00986-x

Cited by 12 publications

(14 citation statements)

References 42 publications

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“…Researchers were more supportive of returning results if they explain the cause of the condition under study [ 76 ], relate to treatable or preventable conditions [ 137 , 142 ], and have clinical utility [ 134 ], clinical relevance [ 135 ], or if the result is available as a clinical test [ 134 ]. However, one study also showed support for returning results that provided non-medical actionability (54%) because it could lead to behavior change or because patients had a right to know [ 136 ].…”

Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

“…However, one study also showed support for returning results that provided non-medical actionability (54%) because it could lead to behavior change or because patients had a right to know [ 136 ]. Another study showed some support for results that are medically relevant but not actionable (45%) and higher support for returning risk for Huntington disease (71%) and Alzheimer’s disease risk (64%) for planning purposes [ 142 ]. There was very little support for returning VUS.…”

Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

“…Researchers also discussed other benefits of returning results, such as the ability to allow for early interventions [ 136 ], plan their futures [ 137 ], to improve quality of life [ 136 ], and the potential to lower their environmental risks for psychiatric disease and reduce stigma associated with mental illness [ 136 ]. Researchers also suggested returning results shows respect for patient-participant autonomy and recognizes participants’ ownership of their data [ 142 ].…”

Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

“…Clinical research setting. Seventeen studies have investigated views of researchers on returning IRR [44,76,84,119,18,128,[133][134][135][136][137][138][139][140][141][142][143]. A study of 39 psychiatric genetic researchers from 17 countries indicated that the majority of participants were either not returning results at all or had returned results but were not doing so in a systematic way [137].…”

Section: Researchers' Views On Returning Study-specific Resultsmentioning

confidence: 99%

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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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Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

Section: Researchers' Views On Returning Study-specific Resultsmentioning

confidence: 99%

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

et al. 2021

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“…In addition, the utility of PRS and how PRS should be used continue to be debated. 11,[24][25][26][27] Given the position of child and adolescent psychiatrists (CAP) as key stakeholders in the implementation of psychiatric PRS, it is critical to understand their perspectives toward use of PRS for psychiatric conditions in this population. Here we report CAP knowledge and experience with PRS, their perceived utility of PRS compared to other psychiatric genetic testing, their concerns about how psychiatric PRS could be used in child and adolescent psychiatry, how they anticipate they would respond to PRS results in their clinical practice, and their perception of the appropriateness of using psychiatric PRS for screening purposes.…”

Section: Introductionmentioning

confidence: 99%

Psychiatric polygenic risk scores: Child and adolescent psychiatrists’ knowledge, attitudes, and experiences

Pereira

Muñoz

Small

et al. 2021

Preprint

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Objective: Psychiatric polygenic risk scores (PRS) have the potential to transform aspects of psychiatric care and prevention, but there are concerns about their implementation. We sought to assess child and adolescent psychiatrists' (CAP) experiences, perspectives, and potential uses of psychiatric PRS. Methods: A survey of 960 US-based practicing CAP. Results: Most respondents (54%) believed psychiatric PRS are currently at least slightly useful and 87% believed they will be so in five years. Yet, 77% rated their knowledge of PRS as poor or very poor. Ten percent have had a patient/family bring PRS to them, and 25% would request PRS if a patient/caregiver asked. Respondents endorsed different actions in response to a hypothetical child with a top 5th percentile psychiatric PRS but no diagnosis: 48% would increase prospective monitoring of symptoms, 42% would evaluate for current symptoms, and 4% would prescribe medications. Most respondents were concerned that high PRS results could lead to overtreatment and negatively impact patients' emotional well-being. Conclusion: Findings indicate emerging use of psychiatric PRS within child and adolescent psychiatry in the US. Thus, it is critical to examine the ethical and clinical challenges that PRS may generate and begin efforts to promote their informed and responsible use.

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Psychiatric polygenic risk scores: Child and adolescent psychiatrists' knowledge, attitudes, and experiences

Pereira

Muñoz

Small

et al. 2022

American J of Med Genetics Pt B

Self Cite

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Psychiatric polygenic risk scores (PRS) have potential utility in psychiatric care and prevention, but there are concerns about their implementation. We surveyed 960 US-based practicing child and adolescent psychiatrists' (CAP) about their experiences, perspectives, and potential uses of psychiatric PRS. While 23% of CAP reported that they had never heard of PRS, 10 % of respondents have had a patient/ family bring PRS to them and 4% have generated PRS for patients. Though 25% stated they would request PRS if a patient/caregiver asked, 35% indicated that nothing would prompt them to request PRS. Most respondents (54%) believed psychiatric PRS are currently at least slightly useful and 87% believed they will be so in 5 years.More than 70% indicated they would take action in response to a child with a top fifth percentile psychiatric PRS but no diagnosis: 48% would increase monitoring of symptoms, 42% would evaluate for current symptoms, and 4% would prescribe medications. Yet, most respondents were concerned that high-PRS results could lead to overtreatment and negatively impact patients' emotional well-being. Findings indicate emerging use of psychiatric PRS within child and adolescent psychiatry in the US. It is critical to examine the ethical and clinical challenges that PRS may generate and begin efforts to promote their informed and responsible use.

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Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge

Cited by 12 publications

References 42 publications

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

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

Psychiatric polygenic risk scores: Child and adolescent psychiatrists’ knowledge, attitudes, and experiences

Psychiatric polygenic risk scores: Child and adolescent psychiatrists' knowledge, attitudes, and experiences

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