Ethics in genetic counselling

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http://hdl.handle.net/10138/307791

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Clarke , A J & Wallgren-Pettersson , C 2019 , ' Ethics in genetic counselling ' , Journal of Community Genetics , vol. 10 , no. 1 , pp. 3-33 . https://doi.org/10.1007/s12687-018-0371-7

Title: Ethics in genetic counselling
Author: Clarke, Angus J.; Wallgren-Pettersson, Carina
Contributor: University of Helsinki, Medicum
Date: 2019-01
Language: eng
Number of pages: 31
Belongs to series: Journal of Community Genetics
ISSN: 1868-6001
URI: http://hdl.handle.net/10138/307791
Abstract: Difficult ethical issues arise for patients and professionals in medical genetics, and often relate to the patient’s family or their social context. Tackling these issues requires sensitivity to nuances of communication and a commitment to clarity and consistency. It also benefits from an awareness of different approaches to ethical theory. Many of the ethical problems encountered in genetics relate to tensions between the wishes or interests of different people, sometimes even people who do not (yet) exist or exist as embryos, either in an established pregnancy or in vitro. Concern for the long-term welfare of a child or young person, or possible future children, or for other members of the family, may lead to tensions felt by the patient (client) in genetic counselling. Differences in perspective may also arise between the patient and professional when the latter recommends disclosure of information to relatives and the patient finds that too difficult, or when the professional considers the genetic testing of a child, sought by parents, to be inappropriate. The expectations of a patient’s community may also lead to the differences in perspective between patient and counsellor. Recent developments of genetic technology permit genome-wide investigations. These have generated additional and more complex data that amplify and exacerbate some pre-existing ethical problems, including those presented by incidental (additional sought and secondary) findings and the recognition of variants currently of uncertain significance, so that reports of genomic investigations may often be provisional rather than definitive. Experience is being gained with these problems but substantial challenges are likely to persist in the long term.
Subject: Ethics
Genetic information
Consent
Disclosure
Non-directiveness
Predictive genetic testing
Prenatal diagnosis
Disability
Screening
Incidental findings
Additional findings
Variants of uncertain significance
HUNTINGTON-DISEASE
INCIDENTAL FINDINGS
AMERICAN-COLLEGE
MEDICAL-GENETICS
DECISION-MAKING
CYSTIC-FIBROSIS
CLINICAL EXOME
PRENATAL-DIAGNOSIS
JUNGNER CRITERIA
DOWN-SYNDROME
3111 Biomedicine
1184 Genetics, developmental biology, physiology
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