Literature DB >> 31856388

An ethical framework for genetic counseling in the genomic era.

Leila Jamal1,2, Will Schupmann1, Benjamin E Berkman1,3.   

Abstract

The field of genetic counseling has grown and diversified since the profession emerged in the early 1970s. In the same period, genomic testing has become more complex, profitable, and widespread. With these developments, the scope of ethical considerations relevant to genetic counseling has expanded. In light of this, we find it helpful to revisit how ethical and relational variables are used to inform genetic counseling practice. Our specific focus is on whether, and to what extent, it is ethically acceptable for genetic counselors to make normative recommendations to patients. This article builds on prior literature that has critiqued nondirectiveness, a concept that has influenced and constrained the modern profession of genetic counseling since its origin. In it, we review scholarly efforts to move beyond nondirectiveness, which we believe privilege patient autonomy at the expense of other important values. We then argue that genetic counselors should favor a more explicit commitment to the principles of beneficence and non-maleficence, as well as a broader understanding of autonomy and the relational variables that impact genetic counseling. Finally, to translate our arguments into practice, we present a framework of six considerations that genetic counselors should take into account when deciding whether it is ethically acceptable, or even desirable, to make recommendations to patients in certain areas of their work.
© 2019 National Society of Genetic Counselors.

Entities:  

Keywords:  counseling techniques; cultural competence; ethics; genetic counseling; genetics services; genome sequencing; practice models; professional development

Mesh:

Year:  2019        PMID: 31856388      PMCID: PMC7302959          DOI: 10.1002/jgc4.1207

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.717


  62 in total

1.  Sociocultural differences in the impact of amniocentesis: an anthropological research report.

Authors:  Rayna Rapp
Journal:  Fetal Diagn Ther       Date:  1993-04       Impact factor: 2.587

2.  A quiet revolution: the birth of the genetic counselor at Sarah Lawrence College, 1969.

Authors:  Alexandra Minna Stern
Journal:  J Genet Couns       Date:  2008-11-05       Impact factor: 2.537

Review 3.  Parents' attitudes toward genetic testing of children for health conditions: A systematic review.

Authors:  Q Lim; B C McGill; V F Quinn; K M Tucker; D Mizrahi; A F Patenaude; M Warby; R J Cohn; C E Wakefield
Journal:  Clin Genet       Date:  2017-03-30       Impact factor: 4.438

4.  Reducing Psychological Distress in a Genetic Counseling Consultation for Breast Cancer.

Authors:  Vlatka Duric; Phyllis Butow; Louise Sharpe; Elizabeth Lobb; Bettina Meiser; Alexandra Barratt; Katherine Tucker
Journal:  J Genet Couns       Date:  2003-06       Impact factor: 2.537

5.  Group genetic counseling: An alternate service delivery model in a high risk prenatal screening population.

Authors:  Mireille Cloutier; Lauren Gallagher; Claire Goldsmith; Salwa Akiki; Nick Barrowman; Shawna Morrison
Journal:  Prenat Diagn       Date:  2017-10-17       Impact factor: 3.050

Review 6.  Is non-directive communication in genetic counseling possible?

Authors:  M Pennacchini; C Pensieri
Journal:  Clin Ter       Date:  2011

7.  The nuanced negative: Meanings of a negative diagnostic result in clinical exome sequencing.

Authors:  Debra Skinner; Kelly A Raspberry; Martha King
Journal:  Sociol Health Illn       Date:  2016-08-19

Review 8.  Clinical Genetic Testing for Familial Hypercholesterolemia: JACC Scientific Expert Panel.

Authors:  Amy C Sturm; Joshua W Knowles; Samuel S Gidding; Zahid S Ahmad; Catherine D Ahmed; Christie M Ballantyne; Seth J Baum; Mafalda Bourbon; Alain Carrié; Marina Cuchel; Sarah D de Ferranti; Joep C Defesche; Tomas Freiberger; Ray E Hershberger; G Kees Hovingh; Lala Karayan; Johannes Jacob Pieter Kastelein; Iris Kindt; Stacey R Lane; Sarah E Leigh; MacRae F Linton; Pedro Mata; William A Neal; Børge G Nordestgaard; Raul D Santos; Mariko Harada-Shiba; Eric J Sijbrands; Nathan O Stitziel; Shizuya Yamashita; Katherine A Wilemon; David H Ledbetter; Daniel J Rader
Journal:  J Am Coll Cardiol       Date:  2018-08-07       Impact factor: 24.094

9.  Low rates of African American participation in genetic counseling and testing for BRCA1/2 mutations: racial disparities or just a difference?

Authors:  Chanita Hughes Halbert; Lisa Kessler; Aliya Collier; Benita Weathers; Jill Stopfer; Susan Domchek; Jasmine A McDonald
Journal:  J Genet Couns       Date:  2012-07-12       Impact factor: 2.537

10.  'Is this knowledge mine and nobody else's? I don't feel that.' Patient views about consent, confidentiality and information-sharing in genetic medicine.

Authors:  Sandi Dheensa; Angela Fenwick; Anneke Lucassen
Journal:  J Med Ethics       Date:  2016-01-07       Impact factor: 2.903

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  6 in total

1.  Psychological Impact of Predictive Genetic Testing for Inherited Alzheimer Disease and Frontotemporal Dementia: The IT-DIAfN Protocol.

Authors:  Samantha Galluzzi; Anna Mega; Giuseppe Di Fede; Cristina Muscio; Sara Fascendini; Luisa Benussi; Fabrizio Tagliavini; Giovanni B Frisoni; Emilio Di Maria
Journal:  Alzheimer Dis Assoc Disord       Date:  2022-03-16       Impact factor: 2.357

Review 2.  Ethical, Legal and Social Issues (ELSI) Associated with Non-Invasive Prenatal Testing: Reflections on the Evolution of Prenatal Diagnosis and Procreative Choices.

Authors:  Simona Zaami; Alfredo Orrico; Fabrizio Signore; Anna Franca Cavaliere; Marta Mazzi; Enrico Marinelli
Journal:  Genes (Basel)       Date:  2021-01-30       Impact factor: 4.096

3.  Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals.

Authors:  Stephanie White; Erin Turbitt; Jane L Phillips; Chris Jacobs
Journal:  Eur J Hum Genet       Date:  2022-09-05       Impact factor: 5.351

4.  What's in a Name? Parents' and Healthcare Professionals' Preferred Terminology for Pathogenic Variants in Childhood Cancer Predisposition Genes.

Authors:  Jacqueline D Hunter; Eden G Robertson; Kate Hetherington; David S Ziegler; Glenn M Marshall; Judy Kirk; Jonathan M Marron; Avram E Denburg; Kristine Barlow-Stewart; Meera Warby; Katherine M Tucker; Brittany M Lee; Tracey A O'Brien; Claire E Wakefield
Journal:  J Pers Med       Date:  2022-08-18

Review 5.  Personalized Medicine in Ovarian Cancer: A Perspective From Mexico.

Authors:  Luis E Fernandez-Garza; Irma G Dominguez-Vigil; Jose Garza-Martinez; Erick A Valdez-Aparicio; Silvia A Barrera-Barrera; Hugo A Barrera-Saldana
Journal:  World J Oncol       Date:  2021-07-10

6.  Old Challenges or New Issues? Genetic Health Professionals' Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing.

Authors:  Danya F Vears; Pascal Borry; Julian Savulescu; Julian J Koplin
Journal:  AJOB Empir Bioeth       Date:  2020-10-05
  6 in total

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