Literature DB >> 22899092

Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities.

Paul Steven Miller1, Rebecca Leah Levine.   

Abstract

The relationship between the medical and disability communities is complex and is influenced by historical, social, and cultural factors. Although clinicians, health-care researchers, and people with disabilities all work from the standpoint of the best interest of disabled individuals, the notion of what actually is "best" is often understood quite differently among these constituencies. Eugenics campaigns, legal restrictions on reproductive and other freedoms, and prenatal testing recommendations predicated on the lesser worth of persons with disabilities have all contributed toward the historic trauma experienced by the disability community, particularly with respect to medical genetics. One premise of personalized medicine is that different individuals require different solutions. Disabled persons' experiences are a reminder that these solutions can be best realized by maintaining awareness and sensitivity in a complex ethical and moral terrain. Geneticists should recognize that their research may have implications for those with disabilities; they should recognize the impact of the historical trauma of the eugenics movement, and seek to involve people with disabilities in discussions about policies that affect them. Dialogue can be messy and uncomfortable, but it is the only way to avoid the mistakes of the past and to ensure a more equitable, and healthful, future.

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Mesh:

Year:  2012        PMID: 22899092      PMCID: PMC3566260          DOI: 10.1038/gim.2012.102

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  26 in total

1.  Validity of statutes authorizing asexualization or sterilization of criminals or mental defectives.

Authors:  Jeffrey F Ghent
Journal:  Am Law Rep ALR 3rd Cases Annot       Date:  1973

2.  The long road of eugenics: from Rockefeller to Roe v. Wade.

Authors:  Rebecca Messall
Journal:  Hum Life Rev       Date:  2004

3.  Va. apologizes to the victims of sterilizations.

Authors:  William Branigin
Journal:  Washington Post       Date:  2002-05-03

Review 4.  The relationship between the genetic counseling profession and the disability community: a commentary.

Authors:  Anne C Madeo; Barbara B Biesecker; Campbell Brasington; Lori H Erby; Kathryn F Peters
Journal:  Am J Med Genet A       Date:  2011-05-12       Impact factor: 2.802

Review 5.  Physician recommendations and patient autonomy: finding a balance between physician power and patient choice.

Authors:  T E Quill; H Brody
Journal:  Ann Intern Med       Date:  1996-11-01       Impact factor: 25.391

6.  Nursing in the Native American culture and historical trauma.

Authors:  Roxanne Struthers; John Lowe
Journal:  Issues Ment Health Nurs       Date:  2003 Apr-May       Impact factor: 1.835

Review 7.  Prenatal diagnosis and selective abortion: a challenge to practice and policy.

Authors:  A Asch
Journal:  Am J Public Health       Date:  1999-11       Impact factor: 9.308

8.  Birth prevalence of Down syndrome in Singapore from 1993 to 1998.

Authors:  F M Lai; B H Woo; K H Tan; J Huang; S T Lee; T B Yan; B H Tan; S K Chew; G S H Yeo
Journal:  Singapore Med J       Date:  2002-02       Impact factor: 1.858

9.  Health professional student attitudes towards people with disability.

Authors:  Raymond C Tervo; Glen Palmer; Pat Redinius
Journal:  Clin Rehabil       Date:  2004-12       Impact factor: 3.477

10.  Prenatal diagnosis, pregnancy terminations and prevalence of Down syndrome in Atlanta.

Authors:  Csaba Siffel; Adolfo Correa; Janet Cragan; C J Alverson
Journal:  Birth Defects Res A Clin Mol Teratol       Date:  2004-09
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  5 in total

1.  "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

2.  National Society Of Genetic Counselors Natalie Weissberger Paul National Leadership Award Address: "Patients and Research: Paths to Personal and Professional Growth".

Authors:  Barbara A Bernhardt
Journal:  J Genet Couns       Date:  2016-02-19       Impact factor: 2.537

3.  Preimplantation Genetic Testing for Genetic Kidney Disease: Addressing Moral Uncertainties and Access Inequity.

Authors:  Wylie Burke; Kathleen M West
Journal:  Clin J Am Soc Nephrol       Date:  2020-08-27       Impact factor: 8.237

4.  Transgender and gender-diverse (TGD) individuals' perspectives on research seeking genetic variants associated with TGD identities: a qualitative study.

Authors:  Antoine Rajkovic; Allison L Cirino; Tala Berro; Diane R Koeller; Kimberly Zayhowski
Journal:  J Community Genet       Date:  2021-10-12

Review 5.  Addressing underrepresentation in genomics research through community engagement.

Authors:  Amy A Lemke; Edward D Esplin; Aaron J Goldenberg; Claudia Gonzaga-Jauregui; Neil A Hanchard; Julie Harris-Wai; Justin E Ideozu; Rosario Isasi; Andrew P Landstrom; Anya E R Prince; Erin Turbitt; Maya Sabatello; Samantha A Schrier Vergano; Matthew R G Taylor; Joon-Ho Yu; Kyle B Brothers; Nanibaa' A Garrison
Journal:  Am J Hum Genet       Date:  2022-09-01       Impact factor: 11.043

  5 in total

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