Literature DB >> 21567935

The relationship between the genetic counseling profession and the disability community: a commentary.

Anne C Madeo1, Barbara B Biesecker, Campbell Brasington, Lori H Erby, Kathryn F Peters.   

Abstract

Since the inception of the field of genetic counseling, the profession has had a tenuous relationship with the disability community. Genetic counselors both offer prenatal diagnostic testing that allows individuals the opportunity to avoid the birth of a child with a disability and they advocate for the rights of individuals who have a disability. Some in the disability rights community have argued that they feel their lives and the lives of the disabled individuals in their families judged by the offer of prenatal genetic diagnosis and by the attitudes of genetic service providers they encounter in clinical settings. Select voices from the disability community fear that the result of developing technologies may contribute to a world less tolerant of disabilities. The available empirical data suggest that genetic counselors do little to counteract these perspectives. Although limited, investigations into the attitudes and practices of genetic counselors suggest that they have a more negative perspective on disabilities than individuals whose lives are directly affected by them and these attitudes may affect their description of disabling conditions in a prenatal setting. The National Society of Genetic Counselors, the organization that represents the profession in the US has more publicly aligned itself with abortion service providers over disease advocacy organizations, thus subjecting itself to the perception of bias. We suggest possible solutions to these criticisms and argue that individually and collectively, genetic counseling professionals should develop and identify opportunities to more fully support and advocate for the needs of a broader spectrum of clients.
Copyright © 2011 Wiley-Liss, Inc.

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Year:  2011        PMID: 21567935      PMCID: PMC5240749          DOI: 10.1002/ajmg.a.34054

Source DB:  PubMed          Journal:  Am J Med Genet A        ISSN: 1552-4825            Impact factor:   2.802


  45 in total

1.  Eugenics and nondirectiveness in genetic counseling.

Authors:  Robert G Resta
Journal:  J Genet Couns       Date:  1997-06       Impact factor: 2.537

2.  Disability rights critique of prenatal genetic testing: reflections and recommendations.

Authors:  Erik Parens; Adrienne Asch
Journal:  Ment Retard Dev Disabil Res Rev       Date:  2003

3.  Living with Marfan syndrome III. Quality of life and reproductive planning.

Authors:  K F Peters; F Kong; M Hanslo; B B Biesecker
Journal:  Clin Genet       Date:  2002-08       Impact factor: 4.438

4.  Is modern genetics the new eugenics?

Authors:  Charles J Epstein
Journal:  Genet Med       Date:  2003 Nov-Dec       Impact factor: 8.822

5.  The social and ethical implications of changing medical technologies: the views of people living with genetic conditions.

Authors:  Elizabeth Chapman
Journal:  J Health Psychol       Date:  2002-03

6.  A new definition of Genetic Counseling: National Society of Genetic Counselors' Task Force report.

Authors:  Robert Resta; Barbara Bowles Biesecker; Robin L Bennett; Sandra Blum; Susan Estabrooks Hahn; Michelle N Strecker; Janet L Williams
Journal:  J Genet Couns       Date:  2006-04       Impact factor: 2.537

7.  Prenatal diagnosis of Down syndrome: how best to deliver the news.

Authors:  Brian G Skotko; Priya S Kishnani; George T Capone
Journal:  Am J Med Genet A       Date:  2009-11       Impact factor: 2.802

8.  Reactions of mothers and medical professionals to a film about Down syndrome.

Authors:  W C Cooley; E S Graham; J B Moeschler; J M Graham
Journal:  Am J Dis Child       Date:  1990-10

9.  'Balance' is in the eye of the beholder: providing information to support informed choices in antenatal screening via Antenatal Screening Web Resource.

Authors:  Shenaz Ahmed; Louise Bryant; Jenny Hewison
Journal:  Health Expect       Date:  2007-12       Impact factor: 3.377

10.  Mothers of children with Down syndrome: constructing the sociocultural meaning of disability.

Authors:  Priya Lalvani
Journal:  Intellect Dev Disabil       Date:  2008-12
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  17 in total

1.  Disability advocacy and reproductive choice: engaging with the expressivist objection.

Authors:  Madelyn Peterson
Journal:  J Genet Couns       Date:  2011-10-25       Impact factor: 2.537

2.  Commentary: how individual and profession-level factors influence discussion of disability in prenatal genetic counseling.

Authors:  Jan Hodgson; Jon Weil
Journal:  J Genet Couns       Date:  2011-10-25       Impact factor: 2.537

3.  "This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening.

Authors:  Rosemary J Steinbach; Megan Allyse; Marsha Michie; Emily Y Liu; Mildred K Cho
Journal:  Am J Med Genet A       Date:  2015-11-14       Impact factor: 2.802

4.  The road less traveled: one genetic counselor's reflections on disability and the genetic counseling profession.

Authors:  Melissa Lenihan
Journal:  J Genet Couns       Date:  2012-08-15       Impact factor: 2.537

5.  Benefits, challenges and ethical principles associated with implementing noninvasive prenatal testing: a Delphi study.

Authors:  Charles Dupras; Stanislav Birko; Aliya Affdal; Hazar Haidar; Marie-Eve Lemoine; Vardit Ravitsky
Journal:  CMAJ Open       Date:  2018-10-31

6.  Introduction to the special issue on developmental disabilities.

Authors:  Brenda Finucane
Journal:  J Genet Couns       Date:  2012-10-10       Impact factor: 2.537

7.  Are genetic counselors and the social service system for people with intellectual disability reaching rapprochement?

Authors:  Elliott W Simon
Journal:  J Genet Couns       Date:  2012-07-25       Impact factor: 2.537

8.  Talking about disability in prenatal genetic counseling: a report of two interactive workshops.

Authors:  Jan Hodgson; Jon Weil
Journal:  J Genet Couns       Date:  2011-10-25       Impact factor: 2.537

9.  What is a "balanced" description? Insight from parents of individuals with down syndrome.

Authors:  Catriona Hippman; Angela Inglis; Jehannine Austin
Journal:  J Genet Couns       Date:  2011-12-20       Impact factor: 2.537

10.  Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study.

Authors:  C Roadhouse; C Shuman; K Anstey; K Sappleton; D Chitayat; E Ignagni
Journal:  J Genet Couns       Date:  2018-06-16       Impact factor: 2.537

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