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Ethics of Genetic Counseling

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https://www.readbyqxmd.com/read/27862072/views-of-american-ob-gyns-on-the-ethics-of-prenatal-whole-genome-sequencing
#1
Michelle J Bayefsky, Amina White, Paul Wakim, Sara Chandros Hull, David Wasserman, Stephanie Chen, Benjamin E Berkman
OBJECTIVE: Given public demand for genetic information, the potential to perform prenatal whole-genome sequencing (PWGS) non-invasively in the future, and decreasing costs of whole-genome sequencing, it is likely that OB/GYN practice will include PWGS. The goal of this project was to explore OB/GYNs' views on the ethical issues surrounding PWGS and their preparedness for counseling patients on its use. METHODS: A national survey was administered to 2500 members of American Congress of Obstetricians and Gynecologists...
November 16, 2016: Prenatal Diagnosis
https://www.readbyqxmd.com/read/27761849/a-relational-approach-to-genetic-counseling-for-hereditary-breast-and-ovarian-cancer
#2
Rowan Forbes Shepherd, Tamara Kayali Browne, Linda Warwick
Ethical issues arise for genetic counselors when a client fails to disclose a genetic diagnosis of hereditary disease to family: they must consider the rights of the individual client to privacy and confidentiality as well as the rights of the family to know their genetic risk. Although considerable work has addressed issues of non-disclosure from the client's perspective, there is a lack of qualitative research into how genetic counselors address this issue in practice. In this study, a qualitative approach was taken to investigate whether genetic counselors in Australia use a relational approach to encourage the disclosure of genetic information from hereditary breast and ovarian cancer (HBOC) clients among family members; and if so, how they use it...
October 19, 2016: Journal of Genetic Counseling
https://www.readbyqxmd.com/read/27704392/ancestry-testing-and-the-practice-of-genetic-counseling
#3
Brianne E Kirkpatrick, Misha D Rashkin
Ancestry testing is a home DNA test with many dimensions; in some cases, the implications and outcomes of testing cross over into the health sphere. Common reasons for seeking ancestry testing include determining an estimate of customer's ethnic background, identifying genetic relatives, and securing a raw DNA data file that can be used for other purposes. As the ancestry test marketplace continues to grow, and third-party vendors empower the general public to analyze their own genetic material, the role of the genetic counselor is likely to evolve dramatically...
October 4, 2016: Journal of Genetic Counseling
https://www.readbyqxmd.com/read/27647774/am-i-my-family-s-keeper-disclosure-dilemmas-in-next-generation-sequencing
#4
Roel H P Wouters, Rhodé M Bijlsma, Margreet G E M Ausems, Johannes J M van Delden, Emile E Voest, Annelien L Bredenoord
Ever since genetic testing is possible for specific mutations, ethical debate has sparked on the question of whether professionals have a duty to warn not only patients but also their relatives that might be at risk for hereditary diseases. As next-generation sequencing (NGS) swiftly finds its way into clinical practice, the question who is responsible for conveying unsolicited findings to family members becomes increasingly urgent. Traditionally, there is a strong emphasis on the duties of the professional in this debate...
December 2016: Human Mutation
https://www.readbyqxmd.com/read/27615030/ethical-issues-in-the-evaluation-of-adults-with-suspected-genetic-neuromuscular-disorders
#5
REVIEW
Xiaowei Su, Peter B Kang, James A Russell, Zachary Simmons
Genetic testing is rapidly becoming an increasingly significant part of the diagnostic armamentarium of neuromuscular clinicians. Although technically easy to order, the results of such testing, whether positive or negative, have potentially enormous consequences for the individual tested and for family members. As a result, ethical considerations must be in the forefront of the physician's agenda when obtaining genetic testing. Informed consent is an important starting point for discussions between physicians and patients, but the counseling embedded in the informed consent process must be an ongoing part of subsequent interactions, including return of results and follow-up...
December 2016: Muscle & Nerve
https://www.readbyqxmd.com/read/27550569/public-figures-professional-ethics-and-the-media
#6
David R Fowler
Death certificates and autopsy reports contain personal identifying information and clinical information protected under the Health Insurance Portability and Accountability Act (HIPAA) of 1996. These documents are used, for example, by the families of the deceased for settling estates, bereavement and closure, and genetic counseling of relatives. Insurance companies, public health and law enforcement officials, and the legal community also have legitimate claims to this information. Critical ethical questions have not yet been settled about whether and when this information should be public and under which circumstances making this kind of information public incurs benefits, harms, or both...
2016: AMA Journal of Ethics
https://www.readbyqxmd.com/read/27544064/genetic-testing-and-counseling-in-the-case-of-an-autism-diagnosis-a-caregivers-perspective
#7
Kristien Hens, Hilde Peeters, Kris Dierickx
The search for genes that can explain the development of autism is ongoing. At the same time, genetic counselling and genetic testing can be offered to families with a child diagnosed with autism. However, given the complexity of autism, both with respect to its aetiology as well as with respect to its heterogeneity, such genetic counselling and testing raises specific ethical questions regarding the aim and scope. In order to map these questions and opinions we interviewed 15 Belgian autism professionals. We found that they believed that genetic counselling and genetic testing have certain benefits for families confronted with an autism diagnosis, but also that direct benefit to the child is limited to those cases where a genetic finding offers a certain prognosis and intervention plan...
September 2016: European Journal of Medical Genetics
https://www.readbyqxmd.com/read/27523581/what-can-we-learn-from-patients-ethical-thinking-about-the-right-not-to-know-in-genomics-lessons-from-cancer-genetic-testing-for-genetic-counselling
#8
Lorraine Cowley
This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer (Lynch Syndrome). 50 were invited to participate (42 were tested; eight declined genetic testing). 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees' experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as 'common sense'; the idea of choice around the decision was negated and replaced by a moral imperative to be tested...
October 2016: Bioethics
https://www.readbyqxmd.com/read/27491942/narrative-as-re-fusion-making-sense-and-value-from-sickle-cell-and-thalassaemia-trait
#9
Simon M Dyson, Waqar Iu Ahmad, Karl Atkin
The moral turn within sociology suggests that we need to be attentive to values and have a rapprochement with philosophy. The study of illness narratives is one area of sociology that has consistently addressed itself to moral domains but has tended to focus on stories of living with genetic or chronic illness per se rather than liminal states such as genetic traits. This article takes the case of genetic carriers within racialized minority groups, namely, those with sickle cell or thalassaemia trait, and takes seriously the notion that their narratives are ethical practices In line with the work of Paul Ricoeur, such storied practices are found to link embodiment, social relationships with significant others and wider socio-cultural and socio-political relations...
August 3, 2016: Health (London)
https://www.readbyqxmd.com/read/27465808/identifying-needs-a-qualitative-study-of-women-s-experiences-regarding-rapid-genetic-testing-for-hereditary-breast-and-ovarian-cancer-in-the-dna-bonus-study
#10
Mirjam Tonheim Augestad, Hildegunn Høberg-Vetti, Cathrine Bjorvatn, Ragnhild Johanne Tveit Sekse
Genetic testing for hereditary breast and ovarian cancer is increasingly being offered in newly diagnosed breast and ovarian cancer patients. This genetic information may influence treatment decisions. However, there are some concerns that genetic testing offered in an already vulnerable situation might be an extra burden to these women. The aim of this study was to explore the experiences of women who had been offered and accepted genetic testing when newly diagnosed with breast or ovarian cancer. Four semi-structured focus-group interviews were conducted with 17 women recruited from a Norwegian multicenter study...
July 28, 2016: Journal of Genetic Counseling
https://www.readbyqxmd.com/read/27363385/prenatal-testing-for-adult-onset-conditions-the-position-of-the-national-society-of-genetic-counselors
#11
Laura Hercher, Wendy R Uhlmann, Erin P Hoffman, Shanna Gustafson, Kelly M Chen
Advances in genetic testing and the availability of such testing in pregnancy allows prospective parents to test their future child for adult-onset conditions. This ability raises several complex ethical issues. Prospective parents have reproductive rights to obtain information about their fetus. This information may or may not alter pregnancy management. These rights can be in conflict with the rights of the future individual, who will be denied the right to elect or decline testing. This paper highlights the complexity of these issues, details discussions that went into the National Society of Genetic Counselors (NSGC) Public Policy Task Force's development of the Prenatal testing for Adult-Onset Conditions position statement adopted in November 2014, and cites relevant literature on this topic through December 2015...
July 1, 2016: Journal of Genetic Counseling
https://www.readbyqxmd.com/read/27354939/implementation-of-genomic-medicine-in-sri-lanka-initial-experience-and-challenges
#12
Nirmala D Sirisena, Nilaksha Neththikumara, Kalum Wetthasinghe, Vajira H W Dissanayake
The recent advances in next generation sequencing technologies have made it possible to implement genomic medicine in developing countries such as Sri Lanka where capacity for utilization is limited. This paper aims to describe our initial experience and challenges faced in integrating genomic medicine into routine clinical practice. Using the Illumina MiSeq Next generation sequencing (NGS) platform and an in-house developed bioinformatics pipeline/workflow, we successfully implemented clinical exome sequencing for rare disorders, complex disorders with unusual coexisting phenotypes, and multigene cancer panel testing for inherited cancer syndromes...
June 2016: Applied & Translational Genomics
https://www.readbyqxmd.com/read/27174011/genetic-counseling-and-testing-for-huntington-s-disease-a-historical-review
#13
Martha A Nance
This manuscript describes the ways in which genetic counseling has evolved since John Pearson and Sheldon Reed first promoted "a genetic education" in the 1950s as a voluntary, non-directive clinical tool for permitting individual decision making. It reviews how the emergence of Huntington's disease (HD) registries and patient support organizations, genetic testing, and the discovery of a disease-causing CAG repeat expansion changed the contours of genetic counseling for families with HD. It also reviews the guidelines, outcomes, ethical and laboratory challenges, and uptake of predictive, prenatal, and preimplantation testing, and it casts a vision for how clinicians can better make use of genetic counseling to reach a broader pool of families that may be affected by HD and to ensure that genetic counseling is associated with the best levels of care...
May 13, 2016: American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics
https://www.readbyqxmd.com/read/27167380/impact-of-next-generation-sequencing-on-the-organization-and-funding-of-returning-research-results-survey-of-canadian-research-ethics-boards-members
#14
Iris Jaitovich Groisman, Beatrice Godard
Research Ethics Boards (REBs) are expected to evaluate protocols planning the use of Next Generation Sequencing technologies (NGS), assuring that any genomic finding will be properly managed. As Canadian REBs play a central role in the disclosure of such results, we deemed it important to examine the views and experience of REB members on the return of aggregated research results, individual research results (IRRs) and incidental findings (IFs) in current genomic research. With this intent, we carried out a web-based survey, which showed that 59...
2016: PloS One
https://www.readbyqxmd.com/read/27103422/the-genetic-counselor-s-role-in-managing-ethical-dilemmas-arising-in-the-laboratory-setting
#15
Jessica R Balcom, Katrina E Kotzer, Lindsey A Waltman, Jennifer L Kemppainen, Brittany C Thomas
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...
October 2016: Journal of Genetic Counseling
https://www.readbyqxmd.com/read/27054511/pros-and-cons-of-implementing-a-carrier-genetic-test-in-an-infertility-practice
#16
Elisa Gil-Arribas, Raquel Herrer, José Serna
PURPOSE OF REVIEW: Carrier screening is promptly evolving thanks to the rapid development of new technologies and mutation knowledge. Expanded carrier screening is already being used in assisted reproduction. Medical, ethical, psychological and legal aspects appear from the general public, patients, healthcare providers and scientific societies. Pros and cons of implementing this technique are highlighted. RECENT FINDINGS: Recent publications show the development of wider gene screening panels with lowering cost...
June 2016: Current Opinion in Obstetrics & Gynecology
https://www.readbyqxmd.com/read/27016223/the-genetic-prediction-of-risk-for-gynecologic-cancers
#17
REVIEW
Leslie M Randall, Bhavana Pothuri
Salient to the intent of personalized medicine, hereditary cancer syndromes present significant opportunities in the treatment and prevention of some gynecologic cancers. Mutations in BRCA1, BRCA2, and DNA mismatch repair genes: MLH1, MSH2, MSH6, and PMS2 are important causal agents in hereditary breast and ovarian cancer (HBOC) and Lynch syndromes. Though they only account for an estimated 10-18% of ovarian, tubal, peritoneal, and endometrial cancer cases, inherited cancers are imminently preventable if mutation carriers are identified in a timely manner...
April 2016: Gynecologic Oncology
https://www.readbyqxmd.com/read/26991091/the-use-of-noninvasive-prenatal-testing-in-obstetric-care-educational-resources-practice-patterns-and-barriers-reported-by-a-national-sample-of-clinicians
#18
Ruth M Farrell, Patricia K Agatisa, Mary Beth Mercer, Ariane G Mitchum, Marissa B Coleridge
OBJECTIVE: The aim of this study was to identify how physicians develop their knowledge base and practice patterns regarding noninvasive prenatal testing (NIPT). METHODS: A survey was used to assess physicians' informational sources and practice patterns regarding NIPT. RESULTS: While most of the 258 participants acquire knowledge about NIPT from the medical literature or didactic educational programming, 74 (28.7%) cite commercial laboratories as an initial source and 124 (47...
June 2016: Prenatal Diagnosis
https://www.readbyqxmd.com/read/26937355/ethical-issues-associated-with-genetic-counseling-in-the-context-of-adolescent-psychiatry
#19
REVIEW
Jane Ryan, Alice Virani, Jehannine C Austin
Genetic counseling is a well-established healthcare discipline that provides individuals and families with health information about disorders that have a genetic component in a supportive counseling encounter. It has recently been applied in the context of psychiatric disorders (like schizophrenia, bipolar disorder, schizoaffective disorder, obsessive compulsive disorder, depression and anxiety) that typically appear sometime during later childhood through to early adulthood. Psychiatric genetic counseling is emerging as an important service that fills a growing need to reframe understandings of the causes of mental health disorders...
June 1, 2015: Applied & Translational Genomics
https://www.readbyqxmd.com/read/26901402/genetic-counseling-and-testing-for-alzheimer-s-disease-and-frontotemporal-lobar-degeneration-an-italian-consensus-protocol
#20
Martina Bocchetta, Anna Mega, Livia Bernardi, Emilio Di Maria, Luisa Benussi, Giuliano Binetti, Barbara Borroni, Rosanna Colao, Giuseppe Di Fede, Silvia Fostinelli, Daniela Galimberti, Massimo Gennarelli, Roberta Ghidoni, Irene Piaceri, Michela Pievani, Corinna Porteri, Veronica Redaelli, Giacomina Rossi, Silvia Suardi, Claudio Babiloni, Elio Scarpini, Fabrizio Tagliavini, Alessandro Padovani, Benedetta Nacmias, Sandro Sorbi, Giovanni B Frisoni, Amalia C Bruni
BACKGROUND: Genetic testing of familial Alzheimer's disease (AD) and frontotemporal lobar degeneration (FTLD) is attracting interest thanks to innovative primary prevention clinical trials and increased request for information by at-risk individuals. However, ethical, social, and psychological implications are paramount and genetic testing must be supported by structured genetic counseling. In Italy, practice parameters and guidelines for genetic counseling in dementia are not available...
2016: Journal of Alzheimer's Disease: JAD
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