Patient advocacy in newborn screening: continuities and discontinuities

American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
Diane B Paul

Abstract

In the 1960s, patient advocacy groups were instrumental in efforts to mandate state testing of newborns for phenylketonuria (PKU), a recessively inherited disorder of phenylalanine metabolism. Advocacy groups have continued to actively lobby for the expansion of screening to other conditions detectable in newborns and, currently, for states' adoption of a uniform core screening panel. They have also been generally favorable to the offer of fee-based supplemental screening services. In the early years of newborn screening, groups such as the National Association for Retarded Children (NARC) were strongly imbued with a public-health ethic. This ethic has apparently eroded over time as the result of both broad social changes and the increasing entanglement of such groups with pharmaceutical and biotechnology companies. A history of newborn screening reveals both continuities and discontinuities in the agendas and funding of patient advocacy groups and in their rhetorical strategies. In particular, it demonstrates that there have always been tensions as well as partnerships with medical and other professionals, although the nature and intensity of the former have been affected by advocacy groups' increasing numbers, resources, and ...Continue Reading

References

May 14, 2003·Social Science & Medicine·John McKie, Jeff Richardson
Nov 6, 2004·Australian Health Review : a Publication of the Australian Hospital Association·Hans Lofgren
Sep 21, 2006·Reproductive Biomedicine Online·Jean Cohen
Dec 22, 2006·Mental Retardation and Developmental Disabilities Research Reviews·Donald B BaileyDebra Skinner
Dec 22, 2006·Mental Retardation and Developmental Disabilities Research Reviews·Jennifer L HowseNancy S Green
Jan 19, 2007·Nature Reviews. Genetics·Sharon F TerryLionel G Bercovitch
Jul 24, 2007·The Journal of Pediatrics·Stephen Cederbaum

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Citations

Jan 13, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Donald B BaileyDebra Skinner
Feb 23, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Lainie Friedman RossUNKNOWN American College of Medical Genetics and Genomics
Jan 11, 2011·Medical Anthropology·Mara Buchbinder, Stefan Timmermans
Jun 29, 2011·Epidemiologic Reviews·Wylie BurkeJames P Evans
Jun 26, 2012·Health Care Analysis : HCA : Journal of Health Philosophy and Policy·Aviad RazSilke Schicktanz
May 9, 2012·Annual Review of Genomics and Human Genetics·Beth A Tarini, Aaron J Goldenberg
Dec 10, 2009·The American Journal of Bioethics : AJOB·Sandra Soo-Jin Lee, LaVera Crawley
Jun 26, 2012·The Journal of Pediatrics·Lainie Friedman Ross, Darrel J Waggoner
Apr 18, 2013·Journal of Medical Ethics·Cosby G Arnold
Aug 19, 2015·Canadian Journal of Public Health = Revue Canadienne De Santé Publique·Fiona Alice MillerRobin Hayeems
Apr 15, 2011·Gene Therapy·M HedmanS Ylä-Herttuala
Jan 18, 2008·American Journal of Medical Genetics. Part C, Seminars in Medical Genetics·Lainie Friedman Ross
Sep 5, 2014·Journal of Advanced Nursing·Tamara PowerRoslyn Weaver
Aug 1, 2014·Personalized Medicine·Stuart G NichollsJune C Carroll

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