Literature DB >> 17563891

The next exclusion debate: assessing technology, ethics, and intellectual disability after the Human Genome Project.

Kelly M Munger1, Carol J Gill, Kelly E Ormond, Kristi L Kirschner.   

Abstract

Recent scientific discoveries have made it much easier to test prenatally for various genetic disabilities, such as Down syndrome. However, while many observers have heralded such "advances" for their effectiveness in detecting certain conditions, others have argued that they perpetuate discrimination by preventing the birth of children with disabilities. This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. A review of the pertinent research literature includes perspectives of genetic professionals, ethicists, disability studies scholars, parents of children with disabilities, and disabled individuals themselves. Finally, the article explores how future research endeavors, policies, and practices may more effectively integrate and respect the positions of these various stakeholders. (c) 2007 Wiley-Liss, Inc.

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Mesh:

Year:  2007        PMID: 17563891     DOI: 10.1002/mrdd.20146

Source DB:  PubMed          Journal:  Ment Retard Dev Disabil Res Rev        ISSN: 1080-4013


  4 in total

Review 1.  Genetics in child and adolescent psychiatry: methodological advances and conceptual issues.

Authors:  Sarah Hohmann; Nicoletta Adamo; Benjamin B Lahey; Stephen V Faraone; Tobias Banaschewski
Journal:  Eur Child Adolesc Psychiatry       Date:  2015-04-08       Impact factor: 4.785

2.  Ethical, legal, and social issues in health technology assessment for prenatal/preconceptional and newborn screening: a workshop report.

Authors:  B K Potter; D Avard; V Entwistle; C Kennedy; P Chakraborty; M McGuire; B J Wilson
Journal:  Public Health Genomics       Date:  2008-09-03       Impact factor: 2.000

3.  Standardized Assessment Accommodations for Individuals with Intellectual Disability.

Authors:  Talia Thompson; Jeanine M Coleman; Karen Riley; Laurel A Snider; Londi J Howard; Stephanie M Sansone; David Hessl
Journal:  Contemp Sch Psychol       Date:  2018-01-23

4.  Generating a taxonomy for genetic conditions relevant to reproductive planning.

Authors:  Diane M Korngiebel; Carmit K McMullen; Laura M Amendola; Jonathan S Berg; James V Davis; Marian J Gilmore; Cary O Harding; Patricia Himes; Gail P Jarvik; Tia L Kauffman; Kathleen A Kennedy; Dana Kostiner Simpson; Michael C Leo; Frances L Lynch; Denise I Quigley; Jacob A Reiss; C Sue Richards; Alan F Rope; Jennifer L Schneider; Katrina A B Goddard; Benjamin S Wilfond
Journal:  Am J Med Genet A       Date:  2016-03       Impact factor: 2.802

  4 in total

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