Literature DB >> 32302673

Genetic testing for neurodegenerative diseases: Ethical and health communication challenges.

J Scott Roberts1, Anne K Patterson2, Wendy R Uhlmann3.   

Abstract

Advances in genomic science are informing an expansion of genetic testing for neurodegenerative diseases, which can be used for diagnostic and predictive purposes and performed in both medical and consumer genomics settings. Such testing-which is often for severe and incurable conditions like Huntington's, Alzheimer's, and Parkinson's diseases-raises important ethical and health communication challenges. This review addresses such challenges in the contexts of clinical, research, and direct-to-consumer genetic testing; these include informed consent, risk estimation and communication, potential benefits and psychosocial harms of genetic information (e.g., genetic discrimination), access to services, education and workforce needs, and health policies. The review also highlights future areas of likely growth in the field, including polygenic risk scores, use of genetic testing in clinical trials, and return of individual research results.
Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.

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Year:  2020        PMID: 32302673      PMCID: PMC7311284          DOI: 10.1016/j.nbd.2020.104871

Source DB:  PubMed          Journal:  Neurobiol Dis        ISSN: 0969-9961            Impact factor:   5.996


  69 in total

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5.  Projecting the Supply and Demand for Certified Genetic Counselors: a Workforce Study.

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Review 9.  The impact of communicating genetic risks of disease on risk-reducing health behaviour: systematic review with meta-analysis.

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10.  A randomized controlled trial of disclosing genetic risk information for Alzheimer disease via telephone.

Authors:  Kurt D Christensen; Wendy R Uhlmann; J Scott Roberts; Erin Linnenbringer; Peter J Whitehouse; Charmaine D M Royal; Thomas O Obisesan; L Adrienne Cupples; Melissa B Butson; Grace-Ann Fasaye; Susan Hiraki; Clara A Chen; Uwe Siebert; Robert Cook-Deegan; Robert C Green
Journal:  Genet Med       Date:  2017-07-20       Impact factor: 8.822

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2.  Genetic Risk Factors for Alzheimer's Disease in Racial/Ethnic Minority Populations in the U.S.: A Scoping Review.

Authors:  Lindsey Rubin; Lucy A Ingram; Nicholas V Resciniti; Brianna Ashford-Carroll; Katherine Henrietta Leith; Aubrey Rose; Stephanie Ureña; Quentin McCollum; Daniela B Friedman
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3.  Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers.

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  4 in total

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