A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases

JS Paulsen, M Nance, JI Kim, NE Carlozzi… - Progress in …, 2013 - Elsevier
The past decade has witnessed an explosion of evidence suggesting that many
neurodegenerative diseases can be detected years, if not decades, earlier than previously …

[HTML][HTML] The psychological impact of genetic information on children: a systematic review

CE Wakefield, LV Hanlon, KM Tucker, AF Patenaude… - Genetics in …, 2016 - Elsevier
Purpose This review assessed the psychological impact that acquiring personal and familial
genetic information has on children. We also examined the concordance between the …

[图书][B] Social by nature: The promise and peril of sociogenomics

C Bliss - 2018 - books.google.com
Sociogenomics has rapidly become one of the trendiest sciences of the new millennium.
Practitioners view human nature and life outcomes as the result of genetic and social factors …

Parents perspectives on whole genome sequencing for their children: qualified enthusiasm?

JA Anderson, MS Meyn, C Shuman, RZ Shaul… - Journal of Medical …, 2017 - jme.bmj.com
Objective To better understand the consequences of returning whole genome sequencing
(WGS) results in paediatrics and facilitate its evidence-based clinical implementation, we …

Addressing the ethical challenges in genetic testing and sequencing of children

EW Clayton, LB McCullough, LG Biesecker… - The American Journal …, 2014 - Taylor & Francis
American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG)
recently provided two recommendations about predictive genetic testing of children. The …

[HTML][HTML] Effects of genetic risk information on children's psychosocial wellbeing: a systematic review of the literature

CH Wade, BS Wilfond, CM McBride - Genetics in Medicine, 2010 - Elsevier
Purpose As advances in research have made a growing number of genetic tests available,
clinicians will increasingly be faced with making decisions about when offering genetic …

What does the best interests principle of the convention on the rights of the child mean for paediatric healthcare?

JW März - European Journal of Pediatrics, 2022 - Springer
The present review analyses the implications of the best interests of the child principle,
which is one of the most widely discussed principles of medical ethics and human rights, for …

Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments

C Mand, L Gillam, MB Delatycki… - Journal of Medical …, 2012 - jme.bmj.com
Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic
disease. However, testing of minors at risk for adult-onset conditions, where no treatment or …

Disability and genetics in the era of genomic medicine

JL Scully - Nature Reviews Genetics, 2008 - nature.com
Genomic medicine offers a growing number of methods to diagnose, cure or prevent
disability. Although many disabled people welcome these advances, others have …

Parental attitudes toward ethical and social issues surrounding the expansion of newborn screening using new technologies

LE Hasegawa, KA Fergus, N Ojeda, SM Au - Public health genomics, 2011 - karger.com
Aims: This study assessed parent knowledge of newborn screening (NBS) and parent
attitudes toward NBS for untreatable conditions, NBS for late-onset disorders and informed …