scholarly journals Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers

Author(s):  
Gabriel Lázaro-Muñoz ◽  
Laura Torgerson ◽  
Hadley Stevens Smith ◽  
Stacey Pereira
2020 ◽  
Author(s):  
Gabriel Lazaro-Munoz ◽  
Laura N. Torgerson ◽  
Stacey Pereira

Many research sponsors and genetic researchers agree that some medically relevant genetic findings should be offered to participants. The scarcity of research specific to returning genetic results related to psychiatric disorders hinders the ability to develop ethically-justified and empirically-informed guidelines for responsible return of results for these conditions. We surveyed 407 psychiatric genetics researchers from 39 countries to examine their perceptions of challenges to returning individual results and views about best practices for the process of offering and returning results. Most researchers believed that disclosure of results should be delayed if a patient-participant is experiencing significant psychiatric symptoms. Respondents felt that there is little research on the impact of returning results to participants with psychiatric disorders and agreed that return of psychiatric genetics results to patient-participants may lead to discrimination by insurance companies or other third parties. Almost half of researchers believed results should be returned through a participant's treating psychiatrist, but many felt that clinicians lack knowledge about how to manage genetic research results. Most researchers thought results should be disclosed by genetic counselors or medical geneticists and in person, however, almost half also supported disclosure via telemedicine. This is the first global survey to examine the perspectives of researchers with experience working with this patient population and with these conditions. Their perspectives can help inform the development of much-needed guidelines to promote responsible return of results related to psychiatric conditions to patients with psychiatric disorders.


2018 ◽  
Vol 180 (8) ◽  
pp. 589-600 ◽  
Author(s):  
Kristin M. Kostick ◽  
Cody Brannan ◽  
Stacey Pereira ◽  
Gabriel Lázaro‐Muñoz

2020 ◽  
Author(s):  
Gabriel Lázaro-Muñoz ◽  
Laura Torgerson ◽  
Stacey Pereira

AbstractPurposePatient-participants in psychiatric genetics research may be at an increased risk for negative psychosocial impacts related to the return of genetic research results. Examining psychiatric genetics researchers’ return of results practices and perspectives can aid the development of empirically-informed and ethically-sound guidelines.MethodsA survey of 407 psychiatric genetics researchers from 39 countries was conducted to examine current return of results practices, attitudes, and knowledge.ResultsMost respondents (61%) reported that their studies generated medically relevant genomic findings. Although 24% have returned results to individual participants, 52% of those involved in decisions about return of results plan to return or continue to return results. Respondents supported offering medically actionable results related to psychiatric disorders (82%), and the majority agreed non-medically actionable risks for Huntington’s (71%) and Alzheimer’s disease (64%) should be offered. About half (49%) of respondents supported offering reliable polygenic risk scores for psychiatric conditions. Despite plans to return, only 14% of researchers agreed there are adequate guidelines for returning results, and 59% rated their knowledge about how to manage the process for returning results as poor.ConclusionPsychiatric genetics researchers support returning a wide range of results to patient-participants, but they lack adequate knowledge and guidelines.


Author(s):  
Kristen Izaryk ◽  
Robin Edge ◽  
Dawn Lechwar

Purpose The purpose of this article is to explore and describe the approaches and specific assessment tools that speech-language pathologists are currently using to assess social communication disorders (SCDs) in children, in relation to current best practices. Method Ninety-four speech-language pathologists completed an online survey asking them to identify which of the following approaches they use to assess children with SCD: parent/teacher report, naturalistic observation, formal assessment, language sample analysis, interviews, semistructured tasks, and peer/self-report. Participants were also asked to identify specific assessment tools they use within each approach. Results Participants most commonly assess SCDs by combining interviews, naturalistic observation, language sampling, parent/teacher report, and formal assessment. Semistructured tasks and peer/self-report tools were less frequently utilized. Several established parent/teacher report and formal assessment tools were commonly identified for assessing SCDs. Most participants use an informal approach for interviews, language sampling, and naturalistic observations in their SCD assessment process. Conclusions Generally, participants follow best practices for assessing SCDs by combining several different approaches. Some considerations for future assessment are identified, including the use of established protocols in the place of informal approaches in order to make the assessment of SCDs more systematic. Future directions for research are discussed.


Author(s):  
Elena Dukhovny ◽  
E. Betsy Kelly

According to the 2010 U.S. Census, over 20% of Americans speak a language other than English in the home, with Spanish, Chinese, and French being the languages most commonly spoken, aside from English. However, few augmentative and alternative communication (AAC) systems offer multilingual support for individuals with limited functional speech. There has been much discussion in the AAC community about best practices in AAC system design and intervention strategies, but limited resources exist to help us provide robust, flexible systems for users who speak languages other than English. We must provide services that take into consideration the unique needs of culturally and linguistically diverse users of AAC and help them reach their full communication potential. This article outlines basic guidelines for best practices in AAC design and selection, and presents practical applications of these best practices to multilingual/multicultural clients.


2009 ◽  
Vol 18 (4) ◽  
pp. 137-145 ◽  
Author(s):  
Samuel Sennott ◽  
Adam Bowker

People with ASD often need to access AAC in situations where a tabletop digital device is not practical. Recent advancements have made more powerful, portable, and affordable communication technologies available to these individuals. Proloquo2Go is a new portable augmentative and alternative communication system that runs on an iPhone or iPod touch and can be used to meet the diverse needs of individuals with autism spectrum disorders (ASD) who are ambulatory and have difficulty using speech to meet their full daily communication needs. This article examines Proloquo2Go in light of the best practices in AAC for individuals with ASD such as symbols, visual supports, voice output, and inclusion.


2016 ◽  
Vol 1 (6) ◽  
pp. 47-54 ◽  
Author(s):  
Jeffrey J. DiGiovanni ◽  
Travis L. Riffle

The search for best practices in hearing aid fittings and aural rehabilitation has generally used the audiogram and function stemming from peripheral sensitivity. In recent years, however, we have learned that individuals respond differently to various hearing aid and aural rehabilitation techniques based on cognitive abilities. In this paper, we review basic concepts of working memory and the literature driving our knowledge in newer concepts of hearing aid fitting and aural rehabilitation.


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