What is ideal genetic counselling? A survey of current international guidelines
Elina Rantanen,Marja Hietala,Ulf Kristoffersson,Irmgard Nippert,Joerg Schmidtke,Jorge Sequeiros,Helena Kääriäinen +6 more
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The ideal of genetic counselling is rather consistent in the guidelines, but there are some contradictions between the requirements of objective information-giving and adapting counselling to counsellee's circumstances.Abstract:
The objective of this article is to review guidelines that address counselling in the context of genetic testing in order to summarise what aspects of counselling they consider most important, and to examine how they construct the ideal of genetic counselling. Guidelines were collected by examining the websites of different international professional, political, ethical and patient organisations, either previously known or found with the help of the Google search engine, and also using references listed in other studies. The most frequently mentioned topics in the collected 56 guidelines were sought, and this was carried out with the software package Qualitative Solutions and Research for Non-numerical Unstructured Data Indexing Searching and Theorizing. Topics related to genetic counselling that were mentioned in at least 30 of 56 collected documents were considered to be the most important aspects of genetic counselling. The ideal of genetic counselling is expressed in the analysed guidelines as being composed of (1) an appropriately trained professional who understands genetics and its ethical implications well; (2) relevant and objective information; (3) assurance of the counsellee's understanding; (4) psychological support; (5) informed consent; (6) confidentiality of genetic information; (7) considering familial implications; (8) appropriate handling of potential discrimination of testing; and (9) assuring autonomous decision-making by the counsellee. The ideal of genetic counselling is rather consistent in the guidelines, but there are some contradictions between the requirements of objective information-giving and adapting counselling to counsellee's circumstances.read more
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Practical Genetic Counselling
TL;DR: Genetic Counselling: the Wider Picture Population Aspects of genetic Counselling and Genetic Screening Genetics and Society Appendix: Useful Information in Connection with Genetic Counselling.
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Shared decision making and non-directiveness in genetic counselling
TL;DR: The term "genetic counselling" (GC) covers many different activities, but at its core it is a process of communication as mentioned in this paper, which is generally taken to mean that clinical geneticists are trying to help their clients arrive at the best decisions from personal perspectives and are not guiding them towards any particular decision (for example, to test or not to test, to terminate a pregnancy or to continue it).
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Psychosocial Genetic Counseling in the Post-Nondirective Era: A Point of View
TL;DR: It is proposed that nondirectiveness be replaced as the central ethos of genetic counseling, while relevant components (providing balanced information, not imposing the counselor's values) are retained as elements of practice and ethics.