Literature DB >> 29949066

Ethics in genetic counselling.

Angus J Clarke1, Carina Wallgren-Pettersson2,3.   

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.

Entities:  

Keywords:  Additional findings; Consent; Disability; Disclosure; Ethics; Genetic information; Incidental findings; Non-directiveness; Predictive genetic testing; Prenatal diagnosis; Screening; Variants of uncertain significance

Year:  2018        PMID: 29949066      PMCID: PMC6325035          DOI: 10.1007/s12687-018-0371-7

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  8 in total

1.  The fetus in the age of the genome.

Authors:  Dagmar Schmitz; Wolfram Henn
Journal:  Hum Genet       Date:  2021-08-23       Impact factor: 5.881

2.  Recommendations for neonatologists and pediatricians working in first level birthing centers on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian scientific societies and 4 parents' associations.

Authors:  Gregorio Serra; Luigi Memo; Alessandra Coscia; Mario Giuffré; Ambra Iuculano; Mariano Lanna; Diletta Valentini; Anna Contardi; Sauro Filippeschi; Tiziana Frusca; Fabio Mosca; Luca A Ramenghi; Corrado Romano; Annalisa Scopinaro; Alberto Villani; Giuseppe Zampino; Giovanni Corsello
Journal:  Ital J Pediatr       Date:  2021-04-19       Impact factor: 2.638

3.  Cascade screening for beta-thalassaemia in Pakistan: relatives' experiences of a decision support intervention in routine practice.

Authors:  Shenaz Ahmed; Hussain Jafri; Muhammed Faran; Wajeeha Naseer Ahmed; Yasmin Rashid; Yasmin Ehsan; Mushtaq Ahmed
Journal:  Eur J Hum Genet       Date:  2021-10-04       Impact factor: 4.246

4.  Genomics and justice: mitigating the potential harms and inequities that arise from the implementation of genomics in medicine.

Authors:  A J Clarke; C G van El
Journal:  Hum Genet       Date:  2022-04-12       Impact factor: 5.881

5.  Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer-The Familyweb Study.

Authors:  Selina Goodman; Heather Skirton; Leigh Jackson; Ray B Jones
Journal:  Cancers (Basel)       Date:  2021-05-16       Impact factor: 6.639

6.  Ethical Implications of Alzheimer's Disease Prediction in Asymptomatic Individuals through Artificial Intelligence.

Authors:  Frank Ursin; Cristian Timmermann; Florian Steger
Journal:  Diagnostics (Basel)       Date:  2021-03-04

Review 7.  Reproductive options for families at risk of Osteogenesis Imperfecta: a review.

Authors:  Lidiia Zhytnik; Kadri Simm; Andres Salumets; Maire Peters; Aare Märtson; Katre Maasalu
Journal:  Orphanet J Rare Dis       Date:  2020-05-27       Impact factor: 4.123

8.  Creating a cancer genomics curriculum for pediatric hematology-oncology fellows: A national needs assessment.

Authors:  Alise K Murray; Rose B McGee; Roya M Mostafavi; Xiaoqing Wang; Zhaohua Lu; Jessica M Valdez; Michael A Terao; Kim E Nichols
Journal:  Cancer Med       Date:  2021-02-23       Impact factor: 4.452

  8 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.