Huntington's disease and the ethics of genetic prediction.

Terrenoire, Gwen

doi:10.1136/jme.18.2.79

Cited by 36 publications

(15 citation statements)

References 61 publications

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“…Comm., 51] . Questions surrounding timing of testing and informed consent have also been raised in studies of incurable late-onset conditions, like Huntington's disease [52].…”

Section: Ethical Limitationsmentioning

confidence: 99%

How Should Whole-Genome Sequencing be Implemented in Children? A Consideration of the Current Limitations

Char

2015

Per. Med.

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In children, whole-genome sequencing (WGS) is envisioned as a tool to improve diagnosis of undiagnosed diseases and to improve population-based screening. Pilot applications have shown benefits: genomic information has been used as a diagnostic aid; pharmacogenomics can reduce medicine-related adverse events; advanced knowledge of the potential for later-onset disease can target tests and appropriate therapies. However, emerging technical, conceptual and ethical challenges may limit WGS from fulfilling the current vision for future applications. WGS platforms still struggle with reliability and accuracy. The role of the genome in long-term organismal function and disease is still being established. Ethical implications of WGS in both undiagnosed disease and population screening, particularly potential impacts of testing on children and their families are still unresolved.

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“…Comm., 51] . Questions surrounding timing of testing and informed consent have also been raised in studies of incurable late-onset conditions, like Huntington's disease [52].…”

Section: Ethical Limitationsmentioning

confidence: 99%

How Should Whole-Genome Sequencing be Implemented in Children? A Consideration of the Current Limitations

Char

2015

Per. Med.

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“…A significant number of publications demonstrate the efforts to understand the consequences of genetic testing for this disease and to resolve the ethical problems related to these tests. 1,2 In most of the publications that discuss ethical questions, the problem of testing minors is mentioned. In 1990, 3 and in 1994, 4 the World Federation of Neurology Research Group on Huntington's Chorea published its guidelines concerning genetic testing for HD.…”

Section: Arch Pediatr Adolesc Med 2000;154:113-119mentioning

confidence: 99%

Testing Adolescents for a Hereditary Breast Cancer Gene (BRCA1)

Elger¹,

Harding²

2000

Arch Pediatr Adolesc Med

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The testing of individuals before the age of 18 years for hereditary late-onset diseases has been judged ethically not acceptable in guidelines and directives published by medical professional organizations. However, there are not enough best interest arguments to deny genetic testing to an adolescent at risk of carrying a BRCA1 mutation, even if the competence of adolescents for medical decisions is considered to be lower than the competence of adults. The adolescent's decision is not irrational or of very high risk. Respecting adolescents' autonomous choices concerning genetic testing has positive consequences for their self-esteem and psychological health. Geneticists and other professionals should clearly differentiate between children and adolescents in regard to BRCA1 gene testing and recommend giving decision autonomy about the test to all psychologically "normal" adolescents.

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“…[12] To assist genetic counsellors in dealing with these dilemmas, a set of guidelines for HD predictive testing was developed in the 1990s by The practice of genetic counselling gives rise to many ethical dilemmas, and counsellors need to be familiar with the principles of biomedical ethics. The primary principles include respect for autonomy, beneficence, non-maleficence and justice.…”

mentioning

confidence: 99%