Currents in Contemporary Ethics

For the history of newborn screening, see, e.g., Tarini B. A. , “The Current Revolution in Newborn Screening: New Technology, Old Controversies,” Archives of Pediatric and Adolescent Medicine 161, no. 8 (2007): 767–772; Newborn Screening Task Force, “Serving the Family from Birth to the Medical Home: A Report from the Newborn Screening Task Force Convened in Washington DC, May 10–11, 1999,” Pediatrics 106, no. 2, Pt. 2 (2000): 383–427; Clayton E. W. , “Screening and Treatment of Newborns,” Houston Law Review 29, no. 1 (1992): 85–148.

Guthrie R. , “The Introduction of Newborn Screening for Phenylketonuria: A Personal History,” European Journal of Pediatrics 155, Supp. 1 (1996): S4–S5.

Wilson J. M.G. Jungner Gunnar , “Principles and Practice of Screening Fro Disease,” World Health Organization, available at <http://whqlibdoc.who.int/php/WHO_PHP_34.pdf> (last visited August 10, 2010).

See, e.g, Diaz-Barrios V. , “Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies. New York's Experience,” Pediatrics 83, no. 5, Pt. 2 (1989): 872–875; Garrick M. D. , “Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies: Alternative Methods for Screening,” Pediatrics 83, no. 5, Pt. 2 (1989): 855–857; Grover R , “Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies: Newborn Screening in New York City,” Pediatrics 83, no. 5, Pt. 2 (1989): 819–822; Harris M. S. Eckman J. R. , “Georgia's Experience with Newborn Screening: 1981 to 1985,” Pediatrics 83, no. 5, Pt. 2 (1989): 858–860; Henry D. D. , “Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies: Parental Perspective,” Pediatrics 83, no. 5, Pt. 2 (1989): 910; Hernandez S. , “Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies: Social Work Perspective,” Pediatrics 83, no. 5, Pt. 2 (1989): 903–905; Hurst D. , “Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies: Northern California's Experience,” Pediatrics 83, no. 5, Pt. 2 (1989): 868–871; Kinney T. R. Sawtschenko M. Whorton M. Shearin J. Stine C. Hofman L. Safko R. Vitaglione T. Kaufman R. E. , “Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies. Techniques” Comparison and Report of the North Carolina Experience,” Pediatrics 83, no. 5, Pt. 2 (1989): 843–848; Mack A. K. , “Florida's Experience with Newborn Screening,” Pediatrics 83, no. 5, Pt. 2 (1989): 861–863; Scott R. B. , “Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies: Survey of Comprehensive Centers for Sickle Cell Disease,” Pediatrics 83, no. 5, Pt. 2 (1989): 908–909; Therrell B. L. Jr. Simmank J. L. Wilborn M. , “Experiences with Sickle Hemoglobin Testing in the Texas Newborn Screening Program,” Pediatrics 83, no. 5, Pt. 2 (1989): 864–867; Whitten C. F. , “Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies: Perspective from the National Association for Sickle Cell Disease,” Pediatrics 83, no. 5, Pt. 2 (1989): 906–907.

Parsons E. P. Clarke A. J. Bradley D. M. , “Implications of Carrier Identification in Newborn Screening for Cystic Fibrosis,” Archives of Diseases of Child. Fetal Neonatal Education 88, no. 6 (2003): F467–F471.

See, e.g., UK Newborn Screening Programme Centre, “UK Newborn Screening Programme Centre,” available at <http://newbornbloodspot.screening.nhs.uk/> (screen for total of five disorders) (last visited August 10, 2010); Bodamer O. Hoffmann G. Lindner M. , “Expanded Newborn Screening in Europe 2007,” Journal, of Inherited Metabolic Disease 30, no. 4 (2007): 439–444 (range from 2–20 in 7 countries).

Atkinson K. Zuckerman B. Sharfstein J. M. Levin D. Blatt R. J. Koh H. K. , “A Public Health Response to Emerging Technology: Expansion of the Massachusetts Newborn Screening Program,” Public Health Reports 116, no. 2 (2001): 122–131.

National Newborn Screening and Genetics Resource Center, “Genetic and Newborn Screening Resource Center of the United States,” available at <http://genes-r-us.uthscsa.edu/> (last visited August 10, 2010).

Moyer V. A. Calonge N. Teutsch S. M. Botkin J. R. , “Expanding Newborn Screening: Process, Policy, and Priorities,” Hastings Cent Rep 38, no. 3 (2008): 32–39.

American College of Medical Genetics, “Newborn Screening: Toward a Uniform Screening Panel and System: Report for Public Comment,” available at <http://www.mchb.hrsa.gov/screening/> (last visited August 10, 2010).

Botkin J. R. Clayton E. W. Fost N. C. Burke W. Murray T. H. Baily M. A. Wilfond B. Berg A. Ross L. F. , “Newborn Screening Technology: Proceed with Caution,” Pediatrics 117, no. 5 (2006): 1793–1799.

See, e.g., Save Babies Through Screening Foundation, Inc. “Newborn Screening Saves Babies One Foot at a Time,” available at <http://www.savebabies.org/> (last visited August 10, 2010).

Clayton E. W. , “Lessons to Be Learned From the Move toward Expanded Newborn Screening,” in Baily M. A. Murray T. H. , eds., Ethics and Newborn Genetic Screening: New Technologies, New Challenges (Baltimore: Johns Hopkins University Press, 2009): 125–135.

Sass J. O. Ensenauer R. Roschinger W. Reich H. Steuerwald U. Schirrmacher O. Engel K. Haberle J. Andresen B. S. Megarbane A. Lehnert W. Zschocke J. , “2-Methylbutyryl-Coenzyme a Dehydrogenase Deficiency: Functional and Molecular Studies on a Defect in Isoleucine Catabolism,” Molecular Genetics and Metabolism 93, no. 1 (2008): 30–35.

Levy H. L. , “Lessons from the Past – Looking to the Future: Newborn Screening,” Pediatric Annals 32, no. 8 (2003): 505–508.

Maria Knoppers B. Laberge C. M. , eds., Genetic Screening: From Newborns to DNA Typing: Proceedings of the Workshop on Genetic Screening Held, at La. Sapinière, Québec (Canada) 13th-14th October 1989 for the Bi-Annual Meeting between the Quebec Network of Genetic Medicine and the New England. Regional Screening Program, with a Special Invitation Extended to L'association Française De Prévention Des Handicaps De L'enfant (New York: Elsevier Science, 1990).

U.S. Department of Health and Human Services, and Health Resources and Services Administration, “Secretary's Advisory Committee on Heritable Disorders in Newborns and Children,” available at <http://www.hrsa.gov/heritabledisorderscommittee/> (last visited August 10, 2010).

Collins F. S. , The Language of Life: DNA and the Revolution in Personalized Medicine (New York: Harper Collins, 2010): At 208.

Cody J. D. M. , “An Advocate's Perspective on Newborn Screening Policy,” in Baily M. A. Murray T. H. , Ethics and Newborn Screening: New Technologies, New Challenges (Baltimore, Johns Hopkins University Press, 2009): 58–88.

Genetics and Public Policy Center, “DTC Genetic Testing Companies,” available at <http://www.dnapolicy.org/resources/AlphabetizedDTCGeneticTestingCompanies.pdf> (last visited August 10, 2010).

Pollack A. , “Consumers Slow to Embrace the Age of Genomics,” New York Times, March 20, 2010, at B1.

US Food and Drug Administration, “Letters to Industry,” available at <http://www.fda.gov/MedicalDevices/ResourcesforYou/Industry/ucm111104.htm> (last visited August 10, 2010).

Committee on Bioethics, American Academy of Pediatrics, “Ethical Issues with Genetic Testing in Pediatrics,” Pediatrics 107, no. 6 (2001): 1451–1455; Harper P. S. Clarke A. , “Should We Test Children for “Adult” Genetic Diseases?” The Lancet 335, no. 8699 (1990): 1205–1206; Clarke A. , “The Genetic Testing of Children: Working Party of the Clinical Genetics Society (UK),” Journal of Medical Genetics 31, no. 10 (1994): 785–797; Wertz D. C. Fanos J. H. Reilly P. R. , “Genetic Testing for Children and Adolescents: Who Decides?” JAMA 272, no. 11 (1994): 875–881; Hoffmann D. E. Wulfsberg E. A. , “Testing Children for Genetic Predispositions: Is It in Their Best Interest?” Journal of Law Medicine & Ethics 23, no. 4 (1995): 331–344. But see Robertson S. Savulescu J. , “Is There a Case in Favour of Predictive Genetic Testing in Young Children?” Bioethics 15, no. 1 (2001): 26–49.

Beleno v. Lakey, SA-09-CA-188-FB, (U.S. Dist.Ct., W.D. Tex. 9/17/2009), available at <http://www.genomicslawreport.com/wp-content/uploads/2010/01/Beleno-order.pdf> (order regarding defendants' motion to dismiss and defendants' motion to dismiss or for summary judgment based on mootness) (last visited August 10, 2010).

Root J. , “Texas Officials Agree to Destroy Babies' Blood Samples after Settling Lawsuit,” Dallas Morning News, available at <http://www.texascivilrightsproject.org/?p=1822> (last visited August 10, 2010).

Bearder v. State of Minnesota, 27-CV-09-5615, (Dist. Ct., Hennepin Cty, MN, 11/24/2009), available at <http://www.workplaceprivacyreport.com/uploads/file/Bearder%20Decision%281%29-pdf> (order granting motion to dismiss) (last visited August 10, 2010).

Minn.Stat.Ann. §§ 144.125–8 (2010).

Michigan Department of Community Health, “Michigan Biotrust for Health,” <http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_49l6–232933–,00.html> (accessed August 10, 2010).

Department of Health and Human Services, “Health Information Technology for the Future of Health and Care,” available at <http://healthit.hhs.gov/portal/server.pt> (last visited August 10, 2010).

Collins F. S. , The Language of Life: DNA and the Revolution in Personalized Medicine (New York: Harper Collins, 2010): At 44.