Currents in contemporary ethics: The role of parents in expanded newborn screening

Journal of Law, Medicine and Ethics

Volumn 37, Issue 4, 2009, Pages 846-851

  Harrell, Heather ^a  

^a UNIVERSITY OF FLORIDA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; ETHICS; GENETIC SCREENING; HUMAN; LABORATORY DIAGNOSIS; LEGAL ASPECT; MALE; MANDATORY TESTING; NEWBORN; NEWBORN SCREENING; PARENTAL CONSENT; UNITED STATES;

FALSE POSITIVE REACTIONS; GENETIC TESTING; HUMANS; INFANT, NEWBORN; MALE; MANDATORY TESTING; NEONATAL SCREENING; PARENTAL CONSENT; UNITED STATES;

EID: 76149089215     PISSN: 10731105     EISSN: 1748720X     Source Type: Journal    
DOI: 10.1111/j.1748-720X.2009.00456.x     Document Type: Article

References (54)

1. See, e.g., The President's Council on Bioethics, The Changing Moral Focus of Newborn Screening: An Ethical Analysis by the President's Council on Bioethics, December 2008, at 2, 21, and 49; J. R. Botkin, "Assessing the New Criteria for Newborn Screening," Health Matrix: Journal of Law-Medicine 19, no. 1 (2009): 163-185, at 174.
2. M. A. Baily and T. H. Murray, eds., Ethics and Newborn Genetic Screening: New Technologies, New Challenges (Baltimore : Johns Hopkins University Press, 2009 at 1.
3. Id.
4. L. E. Fisher, "The Use of Tandem Mass Spectrometry in Newborn Screening: Australia's Experience and Its Implications for United States Policy Pacific Rim Law and Policy Journal 15 (2006 137 167, at 142-143.
5. Id., at 143.
6. See The President's Council on Bioethics, supra note 1, at 21-22.
7. A. Andermann, I. Blancquaert, S. Beauchamp, and V. Déry, "Revisiting Wilson and Jungner in the Genomic Era: A Review of Screening Criteria over the Past 40 Years Bulletin of the World Health Organization 86, no. 4 (2008 241 320, available at http://www.who.int/bulletin/volumes/86/4/07- 050112/en/ last visited October 8, 2009).
8. See Botkin, supra note 1, at 165.
9. See The President's Council on Bioethics, supra note 1, at 18.
10. Id., at 21. For the full report of the American College of Medical Genetics, see M. S. Watson et al., "Main Report: Newborn Screening Panel and System," Genetics in Medicine 8, no. 5 (2006): 12S-252S.
11. See AZNewborn website, Evidence Statement: Child Health Promotion (Screening, Counseling, Immunization, Preventive Medication, and Treatment), available at http://www.aznewborn.com/pdf/bus-grp-bloodspot.pdf last visited Sept. 20, 2009).
12. See The President's Council on Bioethics, supra note 1, at 21; Botkin, supra note 1, at 164; and L. E. Cipriano et al., "The Cost-Effectiveness of Expanding Newborn Screening for Up to 21 Inherited Metabolic Disorders Using Tandem Mass Spectrometry: Results from a Decision-Analytic Model Value in Health 10, no. 2 (2007 83 97, at 84.
13. See Fisher, supra note 4, at 137.
14. See the President's Council on Bioethics, supra note 1, at 21-22 and National Newborn Screening and Genetics Resource Center, National Newborn Screening Status Report: Updated 10/09/09, available at http://genes-rus. uthscsa.edu/nbsdisorders.pdf last visited October 8, 2009).
15. See the President's Council on Bioethics, supra note 1, at IX.
16. See Fisher, supra note 4, at 138.
17. See The President's Council on Bioethics, supra note 1, at IX.
18. Id., at 15-16
19. R. Rodney Howell, "Systems to Determine Treatment Effectiveness in Newborn Screening," Health Matrix: Journal of Law-Medicine 19, no. 1 (2009): 155-161, at 157.
20. See Bailey and Murray, supra note 2, at 158-171.
21. See The President's Council on Bioethics, supra note 1, at 10.
22. G. L. Hedlund, N. Longo, and M. Pasquali, "Glutaric Acidemia Type 1 American Journal of Medical Genetics Part C (Seminars in Medical Genetics) 142C, no. 2 (2006 86 94, at 87-88.
23. Statements kept on file with author.
24. See J. R. Botkin et al., "Newborn Screening Technology: Proceed with Caution Pediatrics 117, no. 5 (2006 1793 1799 for information on vulnerable child syndrome, see Healthy Kids with Dr. Nieman, "The Vulnerable Child," available at http://www.healthykids.ca/secure/articles/ thevulnerablechild.html last visited October 8, 2009).
25. See Botkin, supra note 1, at 168.
26. Id., at 174.
27. There are technical difficulties as well as different ethical problems with using some of these pre-natal techniques. See Botkin, supra note 1, at 178-179 (stating that current screens that test the level of biochemicals are ineffective in carrier adults) and L. Friedman Ross and K. Acharya, "Policy Considerations in Designing a Fragile X Population Screening Program Genetic Medicine 10, no. 10 (2008 711 713, at 712 (stating that "[t]he major disadvantage of implementing prenatal screening for FrX rather than NBS is the greater disparity in access to prenatal genetic testing than to neonatal screening"). However, the technical problems may be overcome now or in the future, and the ethical problems may prove to be lesser than those caused by mandatory screening.
28. See Botkin, supra note 1, at 180.
29. See The President's Council on Bioethics, supra note 1, at 44.
30. See Fisher, supra note 4, at 161-162.
31. See Botkin, supra note 1, at 175.
32. Id. (citing M. A. Baily and T. H. Murray, "Ethics, Evidence, and Cost in Newborn Screening: Would Resources Spent on Screening Be Better Spent Elsewhere?" Hastings Center Report 38, no. 3 [2008]: 23, at 28-29).
33. Id.
34. Id., at 174.
35. Cf. Ross and Acharya, supra note 26, at 712.
36. See The President's Council on Bioethics, supra note 1, at 48-49.
37. See, e.g., Hedlund, Longo, and Pasquali, supra note 27, at 87.
38. See The President's Council on Bioethics, supra note 1, at 75-76.
39. See Fisher, supra note 4, at 159.
40. See Troxel v. Granville, 530 U.S. 57, 66 (2000) (stating "the interest of parents in the care, custody, and control of their children-is perhaps the oldest of the fundamental liberty interests recognized by this Court").
41. S. A. Rose, Note, "Kelo v. City of New London: A New Perspective on Economic Freedoms U.C. Davis Law Review 40, no. 5 (2007 1997 2038, at 2012.
42. See The President's Council on Bioethics, supra note 1, at 22 (citing M. G. Wilson and G. Jungner, Principles and Practice of Screening for Disease, World Health Organization, Geneva, 1968).
43. Spiering v. Heineman, 448 F.Supp.2d 1129 (D. Neb. 2006 finding that strict scrutiny does not apply when challenging newborn screening laws as a violation of parents' fundamental rights) and Douglas City v. Anaya, 694 NW2d 601 (2005) (applying rational basis review to a challenge based on the First and Fourteenth Amendments).
44. See Spiering, 448 F.Supp.2d 1129 (finding that strict scrutiny does not apply when challenging newborn screening laws as a violation of parents' fundamental rights because "the right of children to safety" is a right of equal value, and the court should not "tilt the table in favor of the rights of parents and against the safety of children" by applying strict scrutiny).
45. See Spiering, 448 F.Supp.2d 1129 and Douglas City, 694 NW2d 601.
46. See M. A. Baily et al., "The Proceedings of the Public's Health and the Law in the 21st Century; Fourth Annual Partnership Conference Journal of Law, Medicine & Ethics 33, no. 4, Supplement (2005 46 48, at 47.
47. See Botkin, supra note 1 (stating that newborn screening programs should consider opportunity costs).
48. See Baily and Murray, supra note 2, at 313.
49. Cf. Bowen v. Gilliard, 483 U.S. 587, 598 (1987) (speaking of court review of government spending for the general welfare).
50. In re Interest of Anaya, 276 Neb. 825 (2008).
51. See The President's Council on Bioethics, supra note 1, at 93.
52. See Baily and Murray, supra note 2, at 111-112 and The President's Council on Bioethics, supra note 1, at 73.
53. See The President's Council on Bioethics, supra note 1, at 90.
54. See National Newborn Screening and Genetics Resource Center, supra note 14.