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1.
Jessica R. Balcom Katrina E. Kotzer Lindsey A. Waltman Jennifer L. Kemppainen Brittany C. Thomas 《Journal of genetic counseling》2016,25(5):838-854
Ethical dilemmas are encountered commonly in the setting of the clinical genetic testing laboratory due to the complexity of genetic testing and the number of relevant stakeholders involved in the genetic testing process. Based on their clinical training and role within the laboratory, genetic counselors are uniquely equipped to identify and facilitate management of ethical dilemmas. This paper reviews the historical context of ethical theory and its application to the field of genetic counseling. Theoretical and applied ethics are explored in the context of dilemmas arising in the laboratory setting, with a focus on the role of the laboratory genetic counselor in managing ethical dilemmas. Two illustrative case examples are provided. 相似文献
2.
Gemma R Brett Ella J Wilkins Emma T Creed Kirsty West Anna Jarmolowicz Giulia M Valente Yael Prawer Elly Lynch Ivan Macciocca 《Journal of genetic counseling》2018,27(5):1010-1021
As genomic sequencing becomes more widely available in clinical settings for diagnostic purposes, a number of genetic counseling issues are gaining precedence. The ability to manage these issues will be paramount as genetic and non-genetic healthcare professionals navigate the complexities of using genomic technologies to facilitate diagnosis and inform patient management. Counseling issues arising when counseling for diagnostic genomic sequencing were identified by four genetic counselors with 10 years of collective experience providing genetic counseling in this setting. These issues were discussed and refined at a meeting of genetic counselors working in clinical genomics settings in Melbourne, Australia. Emerging counseling issues, or variations of established counseling issues, were identified from the issues raised. Illustrative cases were selected where pre- and post-test genetic counseling was provided in clinical settings to individuals who received singleton or trio WES with targeted analysis. Counseling issues discussed in this paper include a reappraisal of how genetic counselors manage hope in the genomic era, informed consent for secondary use of genomic data, clinical reanalysis of genomic data, unexpected or unsolicited secondary findings, and trio sequencing. The authors seek to contribute to the evolving understanding of genetic counseling for diagnostic genomic sequencing through considering the applicability of existing genetic counseling competencies to managing emerging counseling issues and discussing genetic counseling practice implications. 相似文献
3.
Robert G. Resta Patricia McCarthy Veach Sarah Charles Kristen Vogel Terri Blase Christina G. S. Palmer 《Journal of genetic counseling》2010,19(3):217-227
Publication of original research, clinical experiences, and critical reviews of literature are vital to the growth of the
genetic counseling field, delivery of genetic counseling services, and professional development of genetic counselors. Busy
clinical schedules, lack of time and funding, and training that emphasizes clinical skills over research skills may make it
difficult for new genetic counselors to turn their thesis projects into publications. This paper summarizes and elaborates
upon a presentation aimed at de-mystifying the publishing process given at the 2008 National Society of Genetic Counselors
Annual Education Conference. Specific topics include familiarizing prospective authors, particularly genetic counseling students,
with the basics of the publication process and related ethical considerations. Former students’ experiences with publishing
master’s theses also are described in hopes of encouraging new genetic counselors to submit for publication papers based on
their thesis projects. 相似文献
4.
Nathalie Egalite Iris Jaitovich Groisman Beatrice Godard 《Journal of genetic counseling》2014,23(4):661-670
The potential for next generation sequencing research (NGS) to generate individual genetic results could have implications for the informed consent process and the provision of genetic counseling. We undertook a content analysis of informed consent templates and guidelines produced by Canadian institutional review boards, purposively sampling documents used by researchers to obtain consent from participants in genetics studies. Our goal was to examine the extent to which the informed consent documents addressed genetic counseling and the return of individual genetic results. Our analysis reveals that the majority of informed consent documents did not mention genetic counseling while several did not mention the return of results. We found differences in the ways in which documents addressed availability of counseling, eligibility criteria for referral to a genetic counselor, genetic counselor involvement, provision of services to family members of participants and incidental findings. From an ethical standpoint, consent documents should provide appropriate information so that participants may make an informed decision about their participation in research. The need to ensure adequate counseling for study populations in an NGS research context will necessarily involve adapting values that underlie care in genetic counseling practice. If the interests of research participants are to be truly promoted, the drafting and review of informed consent documents should give proper due to genetic counseling. 相似文献
5.
Induced abortion is one of the most controversial moral issues in American culture, but counselor value struggles regarding abortion are seldom addressed in counseling literature. This article considers the conflictual nature of the the ethical principles of autonomy, fidelity, justice, beneficence, and nonmaleficence as they can occur within the context of the counseling relationship, particularly with clients considering abortion. In addition, the authors present strategies for counselor self-evaluation, offer recommendations, and provide questions to facilitate ethical decision making. 相似文献
6.
Shu-Hong Zhu Gary J. Tedeschi Christopher M. Anderson John P. Pierce 《Journal of counseling and development : JCD》1996,75(2):93-102
Telephone counseling for smoking cessation has been gaining popularity as studies have demonstrated its efficacy. What comprises a successful program, however, has not yet been detailed in the literature. In this article, an innovative telephone counseling intervention for smoking cessation is described, with attention to the clinical issues of client assessment, motivation, self-efficacy, planning, coping, relapse-sensitive call scheduling, and self-image. Counselor training and supervision issues, ethical and legal considerations regarding this form of service delivery, and suggestions for future direction also are outlined. 相似文献
7.
Claire Penn Jennifer Watermeyer Carol MacDonald Colleen Moabelo 《Journal of genetic counseling》2010,19(1):9-21
With its diverse cultural and linguistic profile, South Africa provides a unique context to explore contextual influences
on the process of genetic counseling. Prior research suggests intergenerational differences regarding models of causation
which influence treatment-seeking paths. This pilot study therefore aimed to explore South African traditional beliefs regarding
common childhood genetic disorders. Three focus groups were conducted with fifteen grandmothers from different cultural backgrounds
in an urban community. Questions pertained to the role of the grandmother, traditional beliefs regarding causes of genetic
disorders, explanations of heredity, and prevention and management of genetic disorders. Results indicate a variety of cultural
explanations for causes of childhood genetic disorders. These causes can be classified into categories related to lifestyle,
behavior, social issues, culture, religion, genetic, and familial causes. Prevention and treatment issues are also highlighted.
These findings have implications for genetic counseling practice, which needs to include a greater focus on cultural issues. 相似文献
8.
Advances in next-generation sequencing (NGS) and rapid reductions in cost have increased the use of such technologies in research and clinical practice. However, many barriers exist to translating NGS for routine clinical use, including issues related to the interpretation of results, and the potential to find results that are secondary or incidental to the specific application of NGS. Nonetheless, NGS has become sufficiently affordable to be offered by several clinical laboratories, and increasingly it is becoming an attractive and viable option for clinicians and patients. This article reviews current NGS technologies, highlighting the information genetic counselors need to know to make informed-decisions about utilizing NGS in the clinic, and underscoring the impact of this new testing modality on the practice of genetic counseling. 相似文献
9.
Beeson D 《Journal of genetic counseling》1997,6(1):21-43
Because of its potential for capturing complexity and process and its focus on communicating the meaning in human action, qualitative research is rapidly gaining acceptance in a wide variety of disciplines. Various qualitative approaches to research support its potential usefulness in genetic counseling research. Formulation of research questions and selection of appropriate qualitative methods are the first step. Interviewing, narrative analysis, focus groups, ethnography/participant observation, and participatory action research are only some of the most popular techniques that may be suitable in various situations. Processes of evaluation, analysis, and even ethical issues often differ somewhat from quantitative research. This article discusses these issues and the potential value of qualitative methods for research related to genetic counseling. 相似文献
10.
Álvaro Mendes Alison Metcalfe Milena Paneque Liliana Sousa Angus J. Clarke Jorge Sequeiros 《Family process》2018,57(3):836-846
Genetic information is a family affair. With the expansion of genomic technologies, many new causal genes and variants have been established and the potential for molecular diagnoses increased, with implications not only for patients but also their relatives. The need for genetic counseling and intrafamilial circulation of information on genetic risks grew accordingly. Also, the amount and, particularly, the complexity of the information to convey multiplied. Sharing information about genetic risks with family members, however, has never been an easy matter and often becomes a source of personal and familial conflicts and distress. Ethical requisites generally prevent healthcare professionals from directly contacting their consultands' relatives (affected or still at risk), who often feel unsupported throughout that process. We discuss here the communication of genetic risks to family members. We first consider genomic testing as a basis for family‐centered health care, as opposed to a predominant focus on the individual. We reviewed the literature on sharing genetic risk information with family members, and the associated ethical issues for professionals. Some clinical cases are presented and discussed, and key issues for meeting the needs of individuals and families are addressed. We argue that genetic information is inextricably linked to the family and that communicating about genetic risks is a process grounded within the broader milieu of family relationships and functioning. We conclude for the need for a more family‐centered approach and interventions that can promote sensitive attitudes to the provision of genetic information to and within the family, as well as its inclusion in educational and training programmes for genetic healthcare professionals. 相似文献
11.
Devanshi Patel Erica L. Blouch Linda H. Rodgers-Fouché Margaret M. Emmet Kristen M. Shannon 《Journal of genetic counseling》2018,27(6):1318-1327
The current practice of cancer genetic counseling is undergoing widespread change and scrutiny. While there are clinical resources for genetic counselors (GCs) regarding the delivery of cancer genetic services, there is limited literature regarding effective management of a genetic counseling clinical program. We have developed administrative tools to manage a large team of GCs at a single academic medical center over a period of increasing demand for genetics services, with the initial aim of decreasing wait time for urgent genetic counseling visits. Here, we describe the three main elements of the clinical operations: Balancing patient volume between GCs, scheduling tracks for both routine and urgent appointments, and a team of triaging GCs to ensure appropriate patient referrals. For each of these elements, we describe how they have been modified over time and present data to support the utility of these strategies. The preliminary evidence offered here suggests that these tools allow for an equitable distribution of patient volume between team members, as well as the timely and accurate scheduling of urgent patients. As a result of the experiences presented here, other genetic counseling programs grappling with similar issues should be aware that it is possible to shift clinical operations to serve certain patient populations in a more timely fashion while keeping both providers and GC staff satisfied. 相似文献
12.
Andrea L. Smith James W. Teener Brian C. Callaghan Jack Harrington Wendy R. Uhlmann 《Journal of genetic counseling》2014,23(5):725-733
Amyotrophic lateral sclerosis (ALS) and Huntington disease (HD) are generally considered to be distinct and easily differentiated neurologic conditions. However, there are case reports of the co-occurrence of ALS with HD. We present a 57-year-old male with a clinical diagnosis of sporadic ALS in the context of a family history of HD. This case adds to the limited literature regarding individuals with a family history of HD who present with features of ALS. There were several genetic counseling challenges in counseling this patient including the diagnostic consideration of two fatal conditions, complex risk information, the personal and familial implications, and the patient’s inability to communicate verbally or through writing due to disease progression. DNA banking effectively preserved the right of our patient and his wife not to learn his HD genetic status during a stressful time of disease progression while providing the option for family members to learn this information in the future if desired. We present lessons learned and considerations for other clinical genetics professionals who are presented with similar challenging issues. 相似文献
13.
Patricia L. Devers Amy Cronister Kelly E. Ormond Flavia Facio Campbell K. Brasington Pamela Flodman 《Journal of genetic counseling》2013,22(3):291-295
The 1997 discovery of free fetal DNA in maternal plasma launched clinical researchers’ efforts to establish a reliable method for non-invasive prenatal testing for fetal genetic conditions. Various methods, including, but not limited to, massively parallel sequencing (MPS) and selective analysis of cell-free fetal DNA in maternal plasma, have recently been developed as highly sensitive and specific noninvasive screening tools for common fetal chromosome aneuploidies. Incorporating these new noninvasive technologies into clinical practice will impact the current prenatal screening paradigm for fetal aneuploidy, in which genetic counseling plays an integral role. The National Society of Genetic Counselors (NSGC) currently supports Noninvasive Prenatal Testing/Noninvasive Prenatal Diagnosis (NIPT/NIPD) as an option for patients whose pregnancies are considered to be at an increased risk for certain chromosome abnormalities. NSGC urges that NIPT/NIPD only be offered in the context of informed consent, education, and counseling by a qualified provider, such as a certified genetic counselor. Patients whose NIPT/NIPD results are abnormal, or who have other factors suggestive of a chromosome abnormality, should receive genetic counseling and be given the option of standard confirmatory diagnostic testing. 相似文献
14.
There are few clear definitive guidelines for counselors to implement regarding duty-to-warn cases. In addition, ethical codes do not specifically address duty-to-warn issues. A tentative model to use as a guide in making clinical judgments in such cases is provided as well as case examples to exemplify possible ethical dilemmas in the practice of counseling. 相似文献
15.
Over the last several years, direct to consumer(DTC) genetic testing has received increasing attention in the public, healthcare and academic realms. DTC genetic testing companies face considerable criticism and scepticism,particularly from the medical and genetic counseling community. This raises the question of what specific aspects of DTC genetic testing provoke concerns, and conversely,promises, for genetic counselors. This paper addresses this question by exploring DTC genetic testing through an ethic allens. By considering the fundamental ethical approaches influencing genetic counseling (the ethic of care and principle-based ethics) we highlight the specific ethical concerns raised by DTC genetic testing companies. Ultimately,when considering the ethics of DTC testing in a genetic counseling context, we should think of it as a balancing act. We need careful and detailed consideration of the risks and troubling aspects of such testing, as well as the potentially beneficial direct and indirect impacts of the increased availability of DTC genetic testing. As a result it is essential that genetic counselors stay informed and involved in the ongoing debate about DTC genetic testing and DTC companies. Doing so will ensure that the ethical theories and principles fundamental to the profession of genetic counseling are promoted not just in traditional counseling sessions,but also on a broader level. Ultimately this will help ensure that the public enjoys the benefits of an increasingly genetic based healthcare system. 相似文献
16.
Riley BD Culver JO Skrzynia C Senter LA Peters JA Costalas JW Callif-Daley F Grumet SC Hunt KS Nagy RS McKinnon WC Petrucelli NM Bennett RL Trepanier AM 《Journal of genetic counseling》2012,21(2):151-161
Updated from their original publication in 2004, these cancer genetic counseling recommendations describe the medical, psychosocial, and ethical ramifications of counseling at-risk individuals through genetic cancer risk assessment with or without genetic testing. They were developed by members of the Practice Issues Subcommittee of the National Society of Genetic Counselors Familial Cancer Risk Counseling Special Interest Group. The information contained in this document is derived from extensive review of the current literature on cancer genetic risk assessment and counseling as well as the personal expertise of genetic counselors specializing in cancer genetics. The recommendations are intended to provide information about the process of genetic counseling and risk assessment for hereditary cancer disorders rather than specific information about individual syndromes. Essential components include the intake, cancer risk assessment, genetic testing for an inherited cancer syndrome, informed consent, disclosure of genetic test results, and psychosocial assessment. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care provider's professional judgment based on the clinical circumstances of a client. 相似文献
17.
Lawrence Onoda 《Journal of counseling and development : JCD》1978,57(4):214-217
Biofeedback training is a relatively new procedure that is being incorporated into the counseling services of psychologists and counselors. If the highest professional standards and the appropriate safeguards for clients' welfare are to be maintained, careful attention should be given to the ethical and professional issues involved. The American Psychological Association's (1977) ethical standards for psychologists are the basis of the discussion. It is hoped that the discussion will stimulate further consideration of ethical and professional issues of the clinical application of biofeedback among practitioners. 相似文献
18.
Susan Hiraki Erica S. Rinella Freya Schnabel Ruth Oratz Harry Ostrer 《Journal of genetic counseling》2014,23(4):604-617
With the completion of the Human Genome Project and the development of high throughput technologies, such as next-generation sequencing, the use of multiplex genetic testing, in which multiple genes are sequenced simultaneously to test for one or more conditions, is growing rapidly. Reflecting underlying heterogeneity where a broad range of genes confer risks for one or more cancers, the development of genetic cancer panels to assess these risks represents just one example of how multiplex testing is being applied clinically. There are a number of issues and challenges to consider when conducting genetic testing for cancer risk assessment, and these issues become exceedingly more complex when moving from the traditional single-gene approach to panel testing. Here, we address the practical considerations for clinical use of panel testing for breast, ovarian, and colon cancers, including the benefits, limitations and challenges, genetic counseling issues, and management guidelines. 相似文献
19.
Riggs BJ 《The journal of pastoral care & counseling : JPCC》2006,60(4):353-362
Integrating spirituality and religion into clinical practice or psychotherapy has become a significant area of interest in the mental health field today. This article focuses more specifically on integrating spiritual direction into psychotherapy, discusses ethical issues involved, and suggests ethical guidelines for the appropriate and helpful use of spiritual direction in the context of psychotherapy and counseling. 相似文献
20.
Monica D. Nardini Anne L. Matthews Shawn E. McCandless Larisa Baumanis Aaron J. Goldenberg 《Journal of genetic counseling》2014,23(4):506-515
As newborn screening (NBS) technology expands, genetic counselors will become more involved in counseling for NBS results, including those potentially generated from whole exome sequencing (WES) and eventually whole genome sequencing (WGS). Members of the National Society of Genetic Counselors (NSGC) responded to an online survey (n?=?208) regarding genomic counseling in the context of NBS. The majority of participants (82.1 %) did not feel prepared to counsel for WGS results from NBS. Counselors with previous WES/WGS counseling experience felt more prepared (p?=?0.005) to counsel for WGS results from NBS than those without WES/WGS experience. Overall, counselors expressed ethical and practical concerns regarding WGS in NBS, as well as a need for additional training regarding this application of the technology before it is implemented. Based on the results of this study, genetic counselors voice caution to the larger genetics community regarding expansion of NBS to incorporate genomic sequencing and advocate for additional education prior to initiating WGS into NBS. 相似文献