Literature DB >> 19059852

Questioning the consensus: managing carrier status results generated by newborn screening.

Fiona Alice Miller1, Jason Scott Robert, Robin Z Hayeems.   

Abstract

An apparent consensus governs the management of carrier status information generated incidentally through newborn screening: results cannot be withheld from parents. This normative stance encodes the focus on autonomy and distaste for paternalism that characterize the principles of clinical bioethics. However, newborn screening is a classic public health intervention in which paternalism may trump autonomy and through which parents are-in effect-required to receive carrier information. In truth, the disposition of carrier results generates competing moral infringements: to withhold information or require its possession. Resolving this dilemma demands consideration of a distinctive body of public health ethics to highlight the moral imperatives associated with the exercise of collective authority in the pursuit of public health benefits.

Mesh:

Year:  2008        PMID: 19059852      PMCID: PMC2622768          DOI: 10.2105/AJPH.2008.136614

Source DB:  PubMed          Journal:  Am J Public Health        ISSN: 0090-0036            Impact factor:   9.308


  42 in total

1.  An ethics framework for public health.

Authors:  N E Kass
Journal:  Am J Public Health       Date:  2001-11       Impact factor: 9.308

2.  In defence of ignorance: genetic information and the right not to know.

Authors:  Graeme T Laurie
Journal:  Eur J Health Law       Date:  1999-06

3.  Public health ethics: mapping the terrain.

Authors:  James F Childress; Ruth R Faden; Ruth D Gaare; Lawrence O Gostin; Jeffrey Kahn; Richard J Bonnie; Nancy E Kass; Anna C Mastroianni; Jonathan D Moreno; Phillip Nieburg
Journal:  J Law Med Ethics       Date:  2002       Impact factor: 1.718

4.  Genetic Privacy: A Challenge to Medico-Legal Norms.

Authors:  Stephanie L. Anderson
Journal:  J Leg Med       Date:  2004

5.  Research for newborn screening: developing a national framework.

Authors:  Jeffrey R Botkin
Journal:  Pediatrics       Date:  2005-10       Impact factor: 7.124

Review 6.  Neonatal screening for sickle cell disorders: what about the carrier infants?

Authors:  L Laird; C Dezateux; E N Anionwu
Journal:  BMJ       Date:  1996-08-17

7.  Neonatal screening and genetic counseling for sickle cell trait.

Authors:  L K Grossman; N A Holtzman; E Charney; A D Schwartz
Journal:  Am J Dis Child       Date:  1985-03

8.  The right to genetic ignorance confirmed.

Authors:  Tuija Takala
Journal:  Bioethics       Date:  1999-07       Impact factor: 1.898

9.  Wrestling with the future: should we test children for adult-onset genetic conditions?

Authors:  Cynthia B Cohen
Journal:  Kennedy Inst Ethics J       Date:  1998-06

10.  Duty to disclose in medical genetics: a legal perspective.

Authors:  M Z Pelias
Journal:  Am J Med Genet       Date:  1991-06-01
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  15 in total

1.  Health-care providers' views on pursuing reproductive benefit through newborn screening: the case of sickle cell disorders.

Authors:  Yvonne Bombard; Fiona A Miller; Robin Z Hayeems; Brenda J Wilson; June C Carroll; Martha Paynter; Julian Little; Judith Allanson; Jessica P Bytautas; Pranesh Chakraborty
Journal:  Eur J Hum Genet       Date:  2011-11-09       Impact factor: 4.246

2.  Public views on participating in newborn screening using genome sequencing.

Authors:  Yvonne Bombard; Fiona A Miller; Robin Z Hayeems; Carolyn Barg; Celine Cressman; June C Carroll; Brenda J Wilson; Julian Little; Denise Avard; Michael Painter-Main; Judith Allanson; Yves Giguere; Pranesh Chakraborty
Journal:  Eur J Hum Genet       Date:  2014-02-19       Impact factor: 4.246

3.  Clinical and ethical considerations in managing carrier detection.

Authors:  Lainie Friedman Ross; Ellen Wright Clayton
Journal:  Am J Public Health       Date:  2009-06-18       Impact factor: 9.308

4.  Carrier detection and clinical uncertainty: the case for public health ethics.

Authors:  Fiona Alice Miller; Robin Z Hayeems; Jason Scott Robert
Journal:  Am J Public Health       Date:  2009-06-18       Impact factor: 9.308

5.  The expansion of newborn screening: is reproductive benefit an appropriate pursuit?

Authors:  Yvonne Bombard; Fiona A Miller; Robin Z Hayeems; Denise Avard; Bartha M Knoppers; Martina C Cornel; Pascal Borry
Journal:  Nat Rev Genet       Date:  2009-10       Impact factor: 53.242

Review 6.  Genetic screening.

Authors:  Wylie Burke; Beth Tarini; Nancy A Press; James P Evans
Journal:  Epidemiol Rev       Date:  2011-06-27       Impact factor: 6.222

Review 7.  Reconsidering reproductive benefit through newborn screening: a systematic review of guidelines on preconception, prenatal and newborn screening.

Authors:  Yvonne Bombard; Fiona A Miller; Robin Z Hayeems; Denise Avard; Bartha M Knoppers
Journal:  Eur J Hum Genet       Date:  2010-03-03       Impact factor: 4.246

Review 8.  Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.

Authors:  Jeffrey R Botkin; John W Belmont; Jonathan S Berg; Benjamin E Berkman; Yvonne Bombard; Ingrid A Holm; Howard P Levy; Kelly E Ormond; Howard M Saal; Nancy B Spinner; Benjamin S Wilfond; Joseph D McInerney
Journal:  Am J Hum Genet       Date:  2015-07-02       Impact factor: 11.025

9.  Effort required to contact primary care providers after newborn screening identifies sickle cell trait.

Authors:  Stephanie A Christopher; Jenelle L Collins; Michael H Farrell
Journal:  J Natl Med Assoc       Date:  2012 Nov-Dec       Impact factor: 1.798

10.  Informing children of their newborn screening carrier result for sickle cell or cystic fibrosis: qualitative study of parents' intentions, views and support needs.

Authors:  Fiona Ulph; Tim Cullinan; Nadeem Qureshi; Joe Kai
Journal:  J Genet Couns       Date:  2013-12-04       Impact factor: 2.537

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