The Clinical Geneticists’ Experiences of Genetic Counseling Service: How Do They Deal with the Needs of Community Residents?

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  • 地域の遺伝相談に対する住民のニーズと意義 ―遺伝相談事業における臨床遺伝専門医の経験から―
  • チイキ ノ イデン ソウダン ニ タイスル ジュウミン ノ ニーズ ト イギ : イデン ソウダン ジギョウ ニ オケル リンショウ イデン センモンイ ノ ケイケン カラ

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Abstract

<p>Aim: To elucidate community residents’ needs for, the significance of, and the role of public health nurse in, genetics counseling services from the perspective of clinical geneticists.</p><p>Methods: Three clinical geneticists who have been involved in genetic counseling services were interviewed. Study participants were recruited through snowball sampling, and consent for participating in this study was obtained from all participants. Interview data were analyzed using a qualitative, descriptive method.</p><p>Results: The analysis indicated the following eight needs of community residents for genetic counseling services: needs changed to arise with developments in genetic and genomic medicine, changes in opportunities for genetic counseling accompanying developments in the systems of genetic and genomic medicine, anxiousness that are unlikely to change regardless of developments in the discipline, decrease in the number of genetic counseling, the familiar environment for community residents, needs for asking simple questions and discussing compelling gene-related issues, for private discussion of gene-related concerns, and discussing anonymously. The following aspects were also identified as explaining the significance of the services themselves: They provide opportunities for genetic counseling offering a wider range of content areas than that offered by medical organizations, for obtaining second opinion consultations, for determining whether a service user should visit a medical organization, for effectively linking consultation services to treatment at a medical organization, they play significant role as forming part of local health services, and they also provide opportunities for clinical geneticists to gain experience. Moreover, seven categories were extracted for the role of, and issues with, public health nurses who are responsible for identifying the potential needs of community residents and referring them to genetics counseling services.</p><p>Discussion: Community residents’ needs for genetic and genomic medicine vary. Certain needs change in accordance with developments in the medical discipline, whereas others remain relatively unchanged. Genetics counseling services are deeply embedded in the local community. Their importance in the community is that they address community residents’ need to ask simple questions and discuss concerns in a familiar environment, and that they determine whether a service user should visit a medical organization. Findings suggested that local nurses (including public health nurses) play an important role in identifying potential needs of community residents.</p>

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