The Experts below are selected from a list of 303 Experts worldwide ranked by ideXlab platform

Barbara B. Biesecker - One of the best experts on this subject based on the ideXlab platform.

  • Advanced Genetic Counseling - Research in Genetic Counseling
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta
    Abstract:

    The field of Genetic Counseling has historically valued the role of research. More recently, graduate programs have raised the standards for student thesis projects so that a greater percent are of publishable quality. The profession has acknowledged key research gaps, such as a lack of consensus on the primary client outcomes of Counseling. Further, the National Society of Genetic Counselors has endorsed the importance of evidence that may be used to guide practice. Herein we present the role of Genetic counselors as researchers and discuss approaches to designing research studies to answer key service delivery questions and patient-reported outcomes. To frame research in Genetic Counseling, health behavior and social psychology theories offer models for identifying key variables likely to predict client decisions and their outcomes. To date, studies in Genetic Counseling have been framed by the self-regulation model and the theory of planned behavior. A systematic review of randomized controlled trials in Genetic Counseling identified psychological well-being and gain in knowledge as the most prevalent patient outcomes. Evidence can be used to predict decisions to undergo Genetic testing or follow up on results.

  • Advanced Genetic Counseling - History of Genetic Counseling
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta
    Abstract:

    The history of Genetic Counseling as a clinical practice ultimately has its roots in eugenics. Although medical Geneticists distanced themselves from eugenic ideology after World War II, that separation was sometimes more in name than practice. The history of the Genetic Counseling profession does not have direct connections to eugenics, although the profession has since its inception been intimately connected with medical Genetics and medical Geneticists. Key historical moments in the emergence of Genetic Counseling as an independent profession include the creation of specialized master’s-level training programs beginning in 1969 at Sarah Lawrence College, the formation of a professional society (the National Society of Genetic Counselors), a professional certification process governed by Genetic counselors separate from medical Geneticists, the establishment of a professional journal, and working affiliations with a wide range of clinicians beyond medical Geneticists such as obstetricians, oncologists, surgeons, cardiologists, and neurologists.

  • Advanced Genetic Counseling - Characteristics of Genetic Counseling Clients
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta, Biesecker Barbara
    Abstract:

    It is readily apparent that not all Genetic Counseling clients are homogeneous. However, it is harder to appreciate the ways that client variability can impact the process, dynamics, and outcomes of Genetic Counseling. Some of the critical client characteristics that come into play during Genetic Counseling are religion, gender, sexuality, ethnicity and culture, language, health status, age, and family dynamics. These traits influence not only the way that we perceive and engage with clients, but also the way that clients perceive and engage with us. Failure to recognize the influence of these characteristics can result in poor Counseling outcomes and frustration on the part of both clients and counselors. Awareness and management of transference and countertransference are critical to delivering competent and compassionate care.

  • Advanced Genetic Counseling - Introduction to Genetic Counseling
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta
    Abstract:

    A critical component of a Genetic counselor’s professional growth is to develop the Counseling skills to be able to “read” patients to gain a better understanding of the psychological underpinnings of their hopes, dreams, fears, choices, actions, suffering, reactions, strengths, and apparent weaknesses, as well as their cognitive understanding of Genetic information. The purpose of this book is to help the reader to develop and expand some Counseling skills that are key to the professional development of a Genetic counselor. This chapter provides an overview of the issues to be addressed in the chapters that follow—Counseling skills, and theories, how to critically think about ethical issues and how they may be addressed in clinical practice, laying a foundation for developing expertise to develop and investigate research questions relevant to the practice of Genetic Counseling, providing a sociological perspective on Genetic Counseling patients and Genetic counselors, and offering a historical context to create a better understanding of why Genetic Counseling looks the way it does today.

  • Advanced Genetic Counseling - Definitions and Goals of Genetic Counseling
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta
    Abstract:

    The definition of Genetic Counseling has evolved from being proscriptive to the triumvirate of patient education, facilitating informed decision making, and adaptation to a risk or condition. This definition, endorsed by the National Society of Genetic Counselors, has been widely cited and used in graduate training around the globe. Despite significant advances in the roles of Genetic counselors, the central tenets of Counseling remain. Our practice model was previously described as psychoeducational but has evolved to psychotherapeutic to emphasize relational Counseling. The goals of Genetic Counseling are specific, vary by subspecialty, and evolve with advances in genomic science. In the cancer setting much of Genetic Counseling is about cancer risk and the potential value of predictive testing to inform choices, whereas in the pediatric setting, the goal is to diagnose or determine a cause for a child’s condition.

Robert G. Resta - One of the best experts on this subject based on the ideXlab platform.

  • Advanced Genetic Counseling - Research in Genetic Counseling
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta
    Abstract:

    The field of Genetic Counseling has historically valued the role of research. More recently, graduate programs have raised the standards for student thesis projects so that a greater percent are of publishable quality. The profession has acknowledged key research gaps, such as a lack of consensus on the primary client outcomes of Counseling. Further, the National Society of Genetic Counselors has endorsed the importance of evidence that may be used to guide practice. Herein we present the role of Genetic counselors as researchers and discuss approaches to designing research studies to answer key service delivery questions and patient-reported outcomes. To frame research in Genetic Counseling, health behavior and social psychology theories offer models for identifying key variables likely to predict client decisions and their outcomes. To date, studies in Genetic Counseling have been framed by the self-regulation model and the theory of planned behavior. A systematic review of randomized controlled trials in Genetic Counseling identified psychological well-being and gain in knowledge as the most prevalent patient outcomes. Evidence can be used to predict decisions to undergo Genetic testing or follow up on results.

  • Advanced Genetic Counseling - History of Genetic Counseling
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta
    Abstract:

    The history of Genetic Counseling as a clinical practice ultimately has its roots in eugenics. Although medical Geneticists distanced themselves from eugenic ideology after World War II, that separation was sometimes more in name than practice. The history of the Genetic Counseling profession does not have direct connections to eugenics, although the profession has since its inception been intimately connected with medical Genetics and medical Geneticists. Key historical moments in the emergence of Genetic Counseling as an independent profession include the creation of specialized master’s-level training programs beginning in 1969 at Sarah Lawrence College, the formation of a professional society (the National Society of Genetic Counselors), a professional certification process governed by Genetic counselors separate from medical Geneticists, the establishment of a professional journal, and working affiliations with a wide range of clinicians beyond medical Geneticists such as obstetricians, oncologists, surgeons, cardiologists, and neurologists.

  • Advanced Genetic Counseling - Characteristics of Genetic Counseling Clients
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta, Biesecker Barbara
    Abstract:

    It is readily apparent that not all Genetic Counseling clients are homogeneous. However, it is harder to appreciate the ways that client variability can impact the process, dynamics, and outcomes of Genetic Counseling. Some of the critical client characteristics that come into play during Genetic Counseling are religion, gender, sexuality, ethnicity and culture, language, health status, age, and family dynamics. These traits influence not only the way that we perceive and engage with clients, but also the way that clients perceive and engage with us. Failure to recognize the influence of these characteristics can result in poor Counseling outcomes and frustration on the part of both clients and counselors. Awareness and management of transference and countertransference are critical to delivering competent and compassionate care.

  • Advanced Genetic Counseling - Introduction to Genetic Counseling
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta
    Abstract:

    A critical component of a Genetic counselor’s professional growth is to develop the Counseling skills to be able to “read” patients to gain a better understanding of the psychological underpinnings of their hopes, dreams, fears, choices, actions, suffering, reactions, strengths, and apparent weaknesses, as well as their cognitive understanding of Genetic information. The purpose of this book is to help the reader to develop and expand some Counseling skills that are key to the professional development of a Genetic counselor. This chapter provides an overview of the issues to be addressed in the chapters that follow—Counseling skills, and theories, how to critically think about ethical issues and how they may be addressed in clinical practice, laying a foundation for developing expertise to develop and investigate research questions relevant to the practice of Genetic Counseling, providing a sociological perspective on Genetic Counseling patients and Genetic counselors, and offering a historical context to create a better understanding of why Genetic Counseling looks the way it does today.

  • Advanced Genetic Counseling - Definitions and Goals of Genetic Counseling
    Advanced Genetic Counseling, 2019
    Co-Authors: Barbara B. Biesecker, Kathryn F. Peters, Robert G. Resta
    Abstract:

    The definition of Genetic Counseling has evolved from being proscriptive to the triumvirate of patient education, facilitating informed decision making, and adaptation to a risk or condition. This definition, endorsed by the National Society of Genetic Counselors, has been widely cited and used in graduate training around the globe. Despite significant advances in the roles of Genetic counselors, the central tenets of Counseling remain. Our practice model was previously described as psychoeducational but has evolved to psychotherapeutic to emphasize relational Counseling. The goals of Genetic Counseling are specific, vary by subspecialty, and evolve with advances in genomic science. In the cancer setting much of Genetic Counseling is about cancer risk and the potential value of predictive testing to inform choices, whereas in the pediatric setting, the goal is to diagnose or determine a cause for a child’s condition.

Sarah Scollon - One of the best experts on this subject based on the ideXlab platform.

  • Scaling Genetic Counseling in the Genomics Era.
    Annual review of genomics and human genetics, 2021
    Co-Authors: Laura M Amendola, Katie Golden-grant, Sarah Scollon
    Abstract:

    The development of massively parallel sequencing-based genomic sequencing tests has increased Genetic test availability and access. The field and practice of Genetic Counseling have adapted in response to this paradigm-shifting technology and the subsequent transition to practicing genomic medicine. While the key elements defining Genetic Counseling remain relevant, Genetic Counseling service delivery models and practice settings have evolved. Genetic counselors are addressing the challenges of direct-to-consumer and consumer-driven Genetic testing, and Genetic Counseling training programs are responding to the ongoing increased demand for Genetic Counseling services across a broadening range of contexts. The need to diversify both the patient and participant groups with access to Genetic information, as well as the field of Genetic Counseling, is at the forefront of research and training program initiatives. Genetic counselors are key stakeholders in the genomics era, and their contributions are essential to effectively and equitably deliver precision medicine. Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Laura M Amendola - One of the best experts on this subject based on the ideXlab platform.

  • Scaling Genetic Counseling in the Genomics Era.
    Annual review of genomics and human genetics, 2021
    Co-Authors: Laura M Amendola, Katie Golden-grant, Sarah Scollon
    Abstract:

    The development of massively parallel sequencing-based genomic sequencing tests has increased Genetic test availability and access. The field and practice of Genetic Counseling have adapted in response to this paradigm-shifting technology and the subsequent transition to practicing genomic medicine. While the key elements defining Genetic Counseling remain relevant, Genetic Counseling service delivery models and practice settings have evolved. Genetic counselors are addressing the challenges of direct-to-consumer and consumer-driven Genetic testing, and Genetic Counseling training programs are responding to the ongoing increased demand for Genetic Counseling services across a broadening range of contexts. The need to diversify both the patient and participant groups with access to Genetic information, as well as the field of Genetic Counseling, is at the forefront of research and training program initiatives. Genetic counselors are key stakeholders in the genomics era, and their contributions are essential to effectively and equitably deliver precision medicine. Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Lucy Holland - One of the best experts on this subject based on the ideXlab platform.

  • A framework for youth-friendly Genetic Counseling
    Journal of Community Genetics, 2019
    Co-Authors: Mary-anne Young, Jeremy Lewin, Kate Thompson, Lucy Holland
    Abstract:

    Young people represent a unique cohort in the context of both healthcare and Genetic risk. Genetic counselors have long recognized and documented the challenges of working with young people and their families compared with working with older adults. Challenges for health professionals include engagement with the young person, communication, developmentally appropriate psychosocial assessment, and working with the young person and their family. Likewise, young people also report experiencing challenges within the Genetic Counseling process. In response to these challenges, and increasing numbers of young people presenting for Genetic testing, Genetic counselors at the Parkville Familial Cancer Centre (Peter MacCallum Cancer Centre, Australia) formed a collaboration with the ONTrac at Peter Mac Victorian Adolescent & Young Adult Cancer Service. Consisting of a multidisciplinary expert panel who provide care to young people with cancer and their families, the collaboration identified the need to develop an evidence-based framework to ensure the delivery of youth-friendly care and support for young people and their families facing Genetic risk. To guide this work, a working party comprising of experts in Genetic Counseling, adolescent and young adult (AYA) oncology, adolescent health, clinical ethics, and clinical research was established. A literature review was undertaken and based on expert and consumer input and feedback, a consensus-based framework for youth-friendly Genetic Counseling was developed over several stages. This paper describes the evidence base supporting the development of this framework, the process of development, and the resulting framework of youth-friendly Genetic Counseling.