Lost in Translation: Limitations of a Universal Approach in Genetic Counseling

Pour-Jafari, Hamid; Pour-Jafari, B

doi:10.1007/s10897-009-9255-7

Cited by 5 publications

(4 citation statements)

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“…To our knowledge, this is the first study on the psychological effect of genetic counseling in Korea. The perception and feelings of receiving genetic test results vary among societies [9,10].…”

Section: Discussionmentioning

confidence: 99%

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Psychological effects and risk perception after genetic counseling

et al. 2021

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Purpose: Demand for genetic counseling on cancer predisposition syndrome is increasing. We evaluated the psychological effect on counselees after genetic counseling at a clinic in a single center. Materials and Methods: We surveyed a total of 72 enrolled participants who visited a genetic counseling clinic at the Samsung Medical Center (SMC). The initial survey was conducted before the first genetic counseling session, and the second survey was conducted after the second genetic counseling session. A total of 43 participants completed both the initial and second surveys. Results: The initial survey of 72 participants indicated higher feelings of guilt in the group with religion, higher depression and anxiety in the group with a diagnosis of self, and higher anxiety in the group on self-referral to the genetic counseling clinic. In the completed survey of 43 participants, overall decreased depression was observed after the second genetic counseling session (P=0.013). Risk perception and anxiety decreased in the group diagnosed with benign variant/variant of uncertain significance (BV/VUS, 25/3) and increased in the group diagnosed with pathogenic variant (PV, 15). Risk perception and anxiety differed between the BV/VUS and PV groups (P<0.001 and P=0.03, respectively). Conclusion:The genetic counseling clinic at the SMC was effective in ameliorating the depression score. Assessment of survey results revealed different depression scores, feelings of guilt and anxiety, and different effects of the genetic counseling clinic, depending on the subgroups. Understanding the needs and psychological characteristics of different groups is necessary for improving genetic counseling services.

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Section: Discussionmentioning

confidence: 99%

“…The study excluded genetic counseling sessions providing genetic test results, and none were from East Asian countries [5]. There is an increasing demand for culture-specific genetic counseling practice [9,10] and only few studies on Koreans have been published to date [11,12].…”

Section: Introductionmentioning

confidence: 99%

Psychological effects and risk perception after genetic counseling

et al. 2021

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“…Globally, the varied pace of professional development for genetic counselors can be attributed to the diverse country-specific social, economic, cultural, and political landscape (Yashar and Peterson 2013). While there is a common genetic counseling goal of providing an opportunity for patients to understand and incorporate genetic information to make informed decisions (Ciarleglio et al 2003;Hodgson and Spriggs 2005;Veach et al 2007), the strategies to achieve these outcomes vary within and across countries (Pour-Jafari and Pourjafari 2010). Given the increasing number of individuals seeking genetic testing and the expanding utilization of genomic technologies in assessing a patient's disease risk, diagnosis and prognosis (Austin 2016;Jimenez-Sanchez 2015;Saqi et al 2016), there is an urgent need to increase availability of qualified genetic counselors across the globe.…”

Section: Introductionmentioning

confidence: 99%

A Report on Ten Asia Pacific Countries on Current Status and Future Directions of the Genetic Counseling Profession: The Establishment of the Professional Society of Genetic Counselors in Asia

Laurino

Leppig

Abad

et al. 2017

Journal of Genetic Counseling

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The Professional Society of Genetic Counselors in Asia (PSGCA) was recently established as a special interest group of the Asia Pacific Society of Human Genetics. Fostering partnerships across the globe, the PSGCA's vision is to be the lead organization that advances and mainstreams the genetic counseling profession in Asia and ensures individuals have access to genetic counseling services. Its mission is to promote quality genetic counseling services in the region by enhancing practice and curricular standards, research and continuing education. The PSGCA was formally launched during the Genetic Counseling Pre-Conference Workshop held at the 11th Asia-Pacific Conference on Human Genetics in Hanoi, Viet Nam, September 16, 2015. The pre-conference workshop provided an opportunity for medical geneticists and genetic counselors from across 10 Asia Pacific countries to learn about the varied genetic counseling practices and strategies for genetic counseling training. This paper provides an overview of the current status and challenges in these countries, and proposed course of unified actions for the future of the genetic counseling profession.

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“…The existence of distinct ethical, legal and social frameworks around the world impact multiple aspects of the genetic counseling interaction, including the expectations from healthcare providers regarding the provider-patient relationship, available options for medical intervention, as well as the process of decisionmaking and health beliefs. These variations highlight the importance of tailoring genetic counseling so that it is responsive to the sociocultural background of the individual as opposed to assuming that there will be a universal approach that will fit all cultures (Edwards 2010;Pour-Jafari and Pourjafari 2010;WHO 2006).…”

Section: Introductionmentioning

confidence: 99%

Peering into a Chilean Black Box: Parental Storytelling in Pediatric Genetic Counseling

Ordonez

Margarit

Downs

et al. 2013

Journal of Genetic Counseling

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While genetic counseling has expanded to multiple international settings, research about providing culturally sensitive services to non-U.S. patients is limited. To gain insights, we utilized a process study to explore parental communication in pediatric genetics clinics in Chile. We utilized a phenomenological hermeneutic approach to assess storytelling in six pediatric sessions that were conducted in Spanish, and translated into English. The majority of the sessions focused on information gathering (35 %), and providing medical (20 %) and genetics education (18 %). The 14 instances of storytelling we identified usually emerged during information gathering, genetics education, and the closing of the session. Stories illustrated parental efforts to create a cognitive and emotional context for their child's genetic diagnosis. Parents emerged as competent caregivers who discussed the role of the child as a social being in the family and the larger community. Our analysis found that genetic counseling sessions in the U.S. and Chile are structured similarly and although communication is not a balanced process, parents use storytelling to participate as active agents in the session. Via storytelling, we learned that parents are working to understand and gain control over their child's genetic diagnosis by relying on mechanisms that extend beyond the genetics appointment.

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Lost in Translation: Limitations of a Universal Approach in Genetic Counseling

Cited by 5 publications

References 0 publications

Psychological effects and risk perception after genetic counseling

Psychological effects and risk perception after genetic counseling

A Report on Ten Asia Pacific Countries on Current Status and Future Directions of the Genetic Counseling Profession: The Establishment of the Professional Society of Genetic Counselors in Asia

Peering into a Chilean Black Box: Parental Storytelling in Pediatric Genetic Counseling

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