currents in contemporary ethics : the role of parents in expanded newborn screening

846 journal of law, medicine & ethics

The Role of Parents in Expanded Newborn Screening

Heather Harrell

The recent increase in the number of diseases for which newborns are screened has led to renewed discus-sion about the risks, benefits, ethics, and advocacy involved in newborn screening. Several authors have rec-ognized that the expansion of new-born panels represents a departure from the original criteria used to de-termine which population screening tests are appropriate, as first outlined by J.M.G. Wilson and G. Jungner in 1968.1 This deviation from the tradi-tional criteria leads to particular con-cerns when parents do not participate in screening decisions for their new-born. Specifically, once the Wilson and Jungner criteria are no longer applied to mandatory newborn screening, the government becomes involved in making value-based decisions, with-out sufficient ethical or legal justifi-cation, that may profoundly affect a family. However, because of the na-ture of the new technology used in newborn panels as well as the num-ber and complexity of illnesses for which the child may be screened, ob-taining traditional informed consent from parents may be very difficult. This article will explore the reasons it is problematic to remove parents from the newborn screening process and suggest a means by which par-ents may meaningfully participate in these complex decisions.

Newborn Screening Newborn screening began in the 1960s, after the development of a simple, inexpensive test for the pres-ence of phenylketonuria (PKU).2 PKU leads to mental retardation, but can be effectively treated by early and continued adherence to a spe-cial diet.3 Mandatory screening was quickly initiated for PKU in many

states; although considered a success, there were problems with applying this relatively new test to the general population.4 With time, the test im-proved and several new screens for other genetic illnesses were devel-oped and included within the new-born panel.5

In 1968, Wilson and Jungner out-lined ten criteria to apply when con-sidering population screening.6 The criteria are listed in Table 1.7 Together, these criteria imply that screening is appropriate for illnesses that are sufficiently understood to cost-effec-tively test the population and prop-erly diagnose individuals who will have clinically relevant disease and would benefit from known treatment initiated before becoming symptom-atic. Although the criteria have been criticized as somewhat vague,8 most of the original genetic diseases cov-ered by newborn screening probably met these criteria.

Each state decides which diseases to include in its newborn screening panel.9 Before the recommendations of the American College of Medical Genetics were released in 2005,10 the Health Resources and Services Asso-ciation decided to support these rec-ommendations,11 and tandem mass spectrometry became available, most states screened for fewer than six illnesses.12 Tandem mass spectrom-etry is a technology that allows one heel stick and one test to screen for numerous illnesses.13 In other words, once a state adopts the technology of tandem mass spectrometry, the incremental cost of testing for addi-tional genetic illnesses is relatively small. With the introduction of this technology, newborn screening has expanded rapidly, with most states

Heather Harrell, M.D., J.D., is a Clinical Associate Professor, Medicine Clerk-ship Director, and Director of Fourth Year Programs at the University of Florida in Gainesville.

Currents in Contemporary Ethics

About This Column

Mark A. Rothstein serves as the section editor for Currents in Contem-porary Ethics. Professor Rothstein is the Herbert F. Boehl Chair of Law and Medicine and the Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine in Kentucky.([email protected])

now mandating screening for more than 30 genetic illnesses.14

Many of the illnesses added to newborn panels do not meet all of the criteria outlined by Wilson and Jungner. In particular, the natural histories of many of the genetic ill-nesses are not well understood,15 nor is there agreement for all illnesses on which newborns with positive screens should be considered patients and have treatment initiated.16 Further, definitively efficacious treatment is not available for all of the illnesses to which screening has been applied.17 Proper follow-up may not always be obtainable, especially given the rar-ity of some of these illnesses,18 and it is not clear that expanded newborn screening is cost-effective under sev-eral different measures.19

My Family’s Experience with Newborn ScreeningMy family lived the consequences of a false positive newborn screening test result after the birth of our son in 2008. He tested positive for glu-taric acidemia type I, an organic acid disorder.20 Our son was placed on a strict feeding regimen — he had to be fed every four hours to possibly pre-vent sudden and irreversible brain damage and his diet was to consist of primarily breast milk or a special, low protein formula. This feeding regimen continued until we received at least preliminary negative results about five months later. The risk of brain damage in children with glu-taric academia type I is particularly high when the child is ill;21 we were therefore advised to avoid daycare, if at all possible, until we had the final results of follow-up testing. He had three follow-up tests, two blood draws, and one urine collection. These three tests cost, without insur-ance discount, more than $9500.22

Although my husband and I did not have a role in deciding whether or for which illnesses our son should be screened, we were confused about our role in the follow-up testing and treatment. For example, when we were told my son had a positive new-born screen, the general sentiment of medical professionals was the result was a false positive. Despite this con-

clusion, there was not a full consent process or indication that we, as par-ents, could refuse the first or even second round of follow-up tests. My husband and I were concerned that declining follow-up testing could be considered neglectful of our son. In addition, would it be considered neglect to allow my son to sleep more than four hours, when we were told to wake and feed him, even if we believed the test result was a false positive and felt it was more impor-tant for our child’s development to sleep until he naturally wakes?

My husband and I both have a medical background and could use that background to evaluate and understand the limits of newborn screening tests. However, other par-ents may not have the same knowl-edge base and resources; further-more, many people are unwilling to challenge the medical establishment or unable to take on the burden of expensive confirmatory tests. For many parents, therefore, the situation can be even more stressful as they are torn between doing what they feel is right for their child and what doctors are telling them about their child’s

possible genetic diagnosis; families may experience guilt, confusion, or vulnerable child syndrome.23 Given such real life consequences of a false positive and that the rate of false pos-itives to true positives is as high as 10 to 1 (or higher) for many of the new-born screens,24 it is not inconceivable that some parents, weighing both information and values, would have a rational and thoughtful preference not to screen for certain rare genetic conditions.

The Ethical Problems with Removing Parents from the Decision-Making Process for Expanded Newborn ScreeningEthical and possibly legal issues arise when states move away from tradi-tional criteria for mandatory screen-ing. Many of the justifications given for expanded newborn screening are inextricably linked to very personal values. When the rationale for adopt-ing mandatory tests is based on in-timate beliefs, not public health rea-soning, it is sensible to question the extent of government involvement in such private decisions. Beyond the justifications for expanded newborn

developing oversight approaches to nanobiotechnology: the lessons of history • winter 2009 847

Table 1 Wilson and Jungner Screening Criteria

Wilson and Jungner Screening Criteria

1. The condition sought should be an important health problem.

2. There should be an accepted treatment for patients with recognized disease.

3. Facilities for diagnosis and treatment should be available.

4. There should be a recognizable latent or early symptomatic stage.

5. There should be a suitable test or examination.

6. The test should be acceptable to the population.

7. The natural history of the condition, including development from latent to declared disease, should be adequately understood.

8. There should be an agreed policy on whom to treat as patients.

9. The cost of case-finding (including diagnosis and treatments of patients diagnosed) should be economically balanced in relation to possible expenditure on medical care as a whole.

10. Case-finding should be a continuing process and not a “once and for all” project.

Table 1 is taken from A. Andermann, I. Blancquaert, S. Beauchamp, 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).

Heather Harrell


JLME COLUMN

screening, the decision to participate in any sort of newborn screening re-quires consideration of difficult ethi-cal balances, including deliberation on the consequences of false posi-tives and the ramifications of genetic knowledge about newborns held by parents, physicians, and state offi-cials. Because medical decisions are generally value laden, bioethics has established patient autonomy as a guiding principle. In the case of new-borns, parents perform the consent functions and the same autonomy principles should be applied to them. Because decisions about newborn screening entail consideration of pri-vate values and the rationale for ex-panded newborn screening is based on personal ethics, it is inappropriate to remove parents from this decision process without sufficient reasons.

One justification to expand new-born screening to illnesses not meet-ing the Wilson and Jungner criteria is that the results give parents informa-tion important for their future repro-ductive decisions.25 However, this justification assumes that the beliefs of those parents whose children screen positive include a desire to know more specifically about health risks for future children, the desire to prevent some or all future pregnan-cies, or the willingness to consider abortion. Parents of children with genetic illness will eventually learn of the diagnosis, once the affected child becomes symptomatic. Yet, this infor-mation, if diagnosed clinically, may not come to the parents until after future pregnancies have occurred. Receiving such information later may be more consistent with the values of those parents. Furthermore, man-dating newborn screening to provide reproductive information to parents presupposes that screening new-borns, rather than testing parents, performing pre-implantation genetic diagnosis, or screening the fetus, is the best method of detecting all of these diseases and for all families.26 How and when parents decide to handle their concerns about genetic disease should be based on medical informa-tion obtained through consultation with a physician, as well as the beliefs

those individuals hold with respect to child bearing.

Another reason given for expanded newborn panels is the public ben-efit of learning more about these rare genetic illnesses.27 By diagnosing these children before symptom onset, we can learn more about the natural history of these disorders and the effectiveness of different types and timing of treatment. In other words, these children, if diagnosed early, can immediately become part of the research about his or her particu-lar illness or possible treatments.28

Whether a parent decides to enroll his or her child in research is legally regulated;29 even if legally feasible, it is a very personal decision for the family because the risks and potential benefits to that particular child must be considered.

Expansion of newborn panels also minimizes the occurrence of the “diagnostic odyssey” (the rela-tively long period of time and mul-tiple tests one usually has to undergo to be diagnosed with a rare genetic condition.)30 It could be argued that even this justification for expanded newborn screening contains a value judgment. Though a diagnostic odys-sey may be avoided, for illnesses for which effective treatment is not known, it has been suggested that the diagnosis may initiate a “therapeutic odyssey.”31 Furthermore, elimination of the diagnostic odyssey means that the period of ignorance of the diag-nosis and the time of seeming health is eliminated for the family.32 Parents may prefer to have such a “care-free” period in which to bond with the child and bring them into the family

unit, especially if early diagnosis does not have any known benefits.

Another justification for expanded newborn screening, benefit to the newborn, does not differ from tra-ditional criteria33 and does not raise such value-laden issues. Nonetheless, participation in newborn screening in general, even newborn screen-ing that meets the traditional crite-ria, entails value-based decisions. As with any screening procedure, there is always the risk of false results. A false positive result has many conse-quences, including follow-up testing

and, perhaps, a period of treatment. Follow-up testing and treatment may have medical risks of their own. Furthermore, a positive result, even if proven to be a false positive, may have consequences in terms of family relationships and stigma from pos-sible genetic illness.34

Not only does contemplation of the risks of false screening results entail considerations of a family’s beliefs and values, but so too does the decision to know genetic information about one’s child. The recent extension of new-born screening could be a prelude to more expansive genetic screening of newborns.35 Even if further screen-ing does not occur, there are still unknowns about some of the genetic illnesses on current newborn panels,36 the activity of many genes, and their interaction with the environment. Whether a parent wants to know certain probabilities about his or her child’s future that can be divined from genetic tests is a very personal deci-sion,37 requiring reflection on what is appropriate for that family and that specific child. Parents should consider

While removing parents from the decision making process for newborn screening raises legal questions about parental rights, mandating newborn screening leads to the problem of when parents can reassume their rights to make medical decisions for their newborns.


Heather Harrell

how the child will respond to the real-ity that parents and physicians hold intimate knowledge about him or her, and how they, as parents, will react to genetic information about themselves that can be gleamed from the testing of their children.

Given how deeply rooted in morals and values decisions about newborn screening are, government needs proper justification to ethically and legally intrude into these decisions. The Wilson and Jungner criteria provide some ethical justification for removing parents from the decision process; generally, parents should not be allowed to refuse reliable, relatively simple screening for an ill-ness for which early, effective, avail-able treatment prevents devastating consequences.38

Legal Concerns Arising from Mandated Expanded Newborn ScreeningLegally, because decisions about new-born screening rest on such personal beliefs about family, child bearing, and child rearing, it could be argued that such parental decisions about newborn screening are fundamen-tal rights,39 deserving of the highest legal protection. Some of the Wil-son and Jungner criteria do mirror, though roughly, the rationale needed to justify government intrusion into a fundamental right. For instance, in order for a law that invades fun-damental rights to be constitutional, the goal of the law must be compel-ling and the law must be narrowly tailored or the least restrictive means of achieving that goal.40 If there is known treatment for a genetic illness that must be initiated before an in-dividual is symptomatic to prevent serious morbidity or mortality, then a newborn screening program could be considered the least restrictive means of achieving the compelling govern-ment goal of addressing “an impor-tant health problem.”41 However, once public health officials depart from the traditional criteria, it is not as clear that the intrusion into parental rights is justified. As an illustration, when there is no known treatment for a particular illness or no consensus on

whom to treat as patients because the illness does not cause the same level of disability in all affected individu-als, it is not clear that screening the entire newborn population is nar-rowly tailored to save lives or improve health.

At least two courts have applied a less stringent judicial standard, ratio-nal basis review, in cases challenging newborn screening as a violation of parental rights.42 One of these courts articulated that parental rights and “the right of children to safety” are of equal value; therefore, when these rights are pitted against each other, parents should not get the benefit of strict scrutiny review.43 However, these cases considered a newborn panel of eight illnesses,44 a panel that may have better conformed to tradi-tional screening criteria. When an illness can be treated and early inter-vention made possible by screen-ing averts certain health problems, the right of children to this “safety” provided by screening is significant. When states deviate from the tradi-tional screening criteria, the right of children to safety is not at issue; for an illness without a treatment, screening all children for that illness will not provide health benefits, and the “safety” of children will not be affected by a screening program.

Regardless, expanded newborn panels that do not meet the tradi-tional Wilson and Jungner crite-ria might even fail a rational basis review. Testing all newborns for an untreatable illness may not be ratio-nally related to improving the health of the state’s population, given some of the negative consequences of extensive newborn screening. For example, the initial adoption of tan-dem mass spectrometry and the increase in follow-up testing needed because of expanded newborn tests is expensive.45 In the reality of limited resources, spending more on new-born screening and less on other child health programs may not improve the health of the state’s children.46 One set of authors reported that when Mississippi expanded its newborn panels, the state concurrently saw a rise in infant mortality.47 Although

causation cannot be assumed and a court would likely be reluctant to review the state’s decision on how to spend money,48 policy makers can-not ignore the possible implications of increased spending on expanded newborn panels.

While removing parents from the decision making process for newborn screening raises legal questions about parental rights, mandating newborn screening leads to the problem of when parents can reassume their rights to make medical decisions for their newborns. A positive test result on a newborn screen leads to follow-up tests and possible treatment. Parents and health officials could be legitimately confused about whether parents may refuse follow-up test-ing or treatment, or choose one type of treatment over another. At least one court has decided that refusal to screen can be a factor in determining if parents have neglected their child;49

how courts would view the decision by parents not to pursue follow-up testing or certain treatments for an illness diagnosed via mandated new-born screening remains to be seen.

The Problem with Traditional Informed Consent for Expanded Newborn Screening and a Possible SolutionExpanded mandatory newborn panels are unjustified ethically and possibly legally because not all of the new illnesses on these expanded panels meet traditional screening criteria. For genetic diseases on newborn panels that do not conform to the traditional screening criteria, the guiding principle of autonomy should be restored and decisions about screening should be returned to the parents. In other words, states could perform such screening only with the consent of parents, as suggested by the President’s Council on Bioethics and practiced by at least one state, Massachusetts.50 Because screening for those illnesses that meet the Wilson and Jungner criteria do not raise as severe ethical or legal concerns as those that do not, it


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would seem reasonable to mandate screening for these illnesses.

The process of informed consent for illnesses that do not meet the original criteria could prove to be dif-ficult for two reasons though. First, when consent is obtained near the time of birth and screening, rates of consent are so high that it is not logical to conclude that parents were truly informed when they made the decision to test their newborn.51 One possible solution to this problem is to obtain consent from parents sometime during prenatal care if the parents are in the health care system before delivery. If not, screening and consent should be performed as long as possible after the delivery but prior to discharge from the hospital.

The second difficulty in obtain-ing informed consent for these ill-nesses is that they are so numerous, it would be nearly impossible to give parents sufficient information about each disease to obtain true informed consent.52 For example, in order to make an informed decision about any screening test, an individual should be told about the rates of false posi-tives and false negatives, the disease course, any possible treatment along with its risks and benefits, if screen-ing for this particular disease also gives information about the presence of some other genetic illnesses, the disease prevalence, etc. Because this second group of illnesses for screen-ing would have 20 or more disorders, it is difficult to believe that parents can retain and process sufficient information about each illness to make an informed decision.

In order to obtain some level of informed consent, these voluntary screening tests should be grouped into consent groups based on the individual test’s specificity and sensi-tivity, the possible treatment options, the likely outcome differences if diag-nosed before versus after becoming clinically symptomatic, the ability to test for the illness individually versus having results linked to other genetic disorders, the prevalence of the ill-nesses, and other relevant factors. By grouping these disorders with volun-tary screening, at least parents will

be able to digest significant amounts of pertinent information to use in deciding which groups to consent to testing for their newborns. As more is learned about the different illnesses, this second group would have to be reevaluated and perhaps regrouped or shifted into the set of mandatory screening tests.

ConclusionParents are usually the best people to make medical decisions for their children because such decisions are generally value laden. However, in most states, parents have been re-moved from the decision-making process for genetic screening for their newborns.53 Furthermore, newborn screening has expanded, and many of the illnesses added to newborn pan-els do not meet traditional criteria for screening. The traditional screening criteria, as outlined by Wilson and Jungner, provide ethical and legal justification for mandating newborn panels. Once the screening criteria are no longer applied to newborn ge-netic testing, parents should decide if screening is appropriate for their child.

Because justification exists for mandating some newborn screening, those newborn screening tests that conform to the Wilson and Jungner criteria should be mandatory while those screens that do not meet the criteria should require informed con-sent. Because the illnesses in this sec-ond group are so numerous, it would be nearly impossible to obtain true informed consent from parents for each disease. Therefore, the disorders in the voluntary screening set should be grouped together based upon information relevant for the deci-sion-making process. Parents could then at least choose the groups of ill-nesses for which their children will be screened based upon substantial, relevant data.

References1. See, e.g., The President’s Council on

Bioethics, The Changing Moral Focus of Newborn Screening: An Ethical Analy-sis by the President’s Council on Bioeth-ics, December 2008, at 2, 21, and 49; J. R. Botkin, “Assessing the New Cri-teria 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 Screen-ing: 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 Implica-tions 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 Bioeth-

ics, supra note 1, at 21-22.7. A. Andermann, I. Blancquaert, S. Beau-

champ, 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 Bioeth-

ics, 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 Bioeth-ics, 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 Inher-ited Metabolic Disorders Using Tan-dem 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 Bioeth-

ics, 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-r-us.uthscsa.edu/nbsdisorders.pdf> (last visited October 8, 2009).

15. See the President’s Council on Bioeth-ics, supra note 1, at IX.

16. See Fisher, supra note 4, at 138.17. See The President’s Council on Bioeth-

ics, supra note 1, at IX.18. Id., at 15-16; R. Rodney Howell, “Sys-

tems to Determine Treatment Effec-tiveness in Newborn Screening,” Health Matrix: Journal of Law-Medicine 19, no. 1 (2009): 155-161, at 157.

19. See Bailey and Murray, supra note 2, at 158-171.


Heather Harrell

20. See The President’s Council on Bioeth-ics, supra note 1, at 10.

21. 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.

22. Statements kept on file with author.23. See J. R. Botkin et al., “Newborn Screen-

ing Technology: Proceed with Caution,” Pediatrics 117, no. 5 (2006): 1793-1799; for information on vulnerable child syn-drome, see Healthy Kids with Dr. Nie-man, “The Vulnerable Child,” available at <http://www.healthykids.ca/secure/articles/thevulnerablechild.html> (last visited October 8, 2009).

24. See Botkin, supra note 1, at 168.25. Id., at 174.26. 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 (stat-ing 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 (stat-ing 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.

27. See Botkin, supra note 1, at 180.


29. See Fisher, supra note 4, at 161-162.30. See Botkin, supra note 1, at 175.31. Id. (citing M. A. Baily and T. H. Mur-

ray, “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).

32. Id.33. Id., at 174.34. Cf. Ross and Acharya, supra note 26, at

712.35. See The President’s Council on Bioeth-

ics, supra note 1, at 48-49.36. See, e.g., Hedlund, Longo, and Pasquali,

supra note 27, at 87.37. See The President’s Council on Bioeth-

ics, supra note 1, at 75-76.38. See Fisher, supra note 4, at 159.39. See Troxel v. Granville, 530 U.S. 57,

66 (2000) (stating “the interest of par-ents in the care, custody, and control of their children-is perhaps the oldest of the fundamental liberty interests recog-nized by this Court”).

40. 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.

41. See The President’s Council on Bioeth-ics, supra note 1, at 22 (citing M. G. Wilson and G. Jungner, Principles and Practice of Screening for Disease, World Health Organization, Geneva, 1968).

42. Spiering v. Heineman, 448 F.Supp.2d 1129 (D. Neb. 2006) (finding that strict scrutiny does not apply when challeng-ing newborn screening laws as a viola-tion of parents’ fundamental rights) and Douglas City v. Anaya, 694 N.W.2d 601

(2005) (applying rational basis review to a challenge based on the First and Fourteenth Amendments).

43. See Spiering, 448 F.Supp.2d 1129 (find-ing that strict scrutiny does not apply when challenging newborn screening laws as a violation of parents’ funda-mental rights because “the right of chil-dren 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 apply-ing strict scrutiny).

44. See Spiering, 448 F.Supp.2d 1129 and Douglas City, 694 N.W.2d 601.

45. See M. A. Baily et al., “The Proceedings of the Public’s Health and the Law in the 21st Century; Fourth Annual Part-nership Conference,” Journal of Law, Medicine & Ethics 33, no. 4, Supple-ment (2005): 46-48, at 47.

46. See Botkin, supra note 1 (stating that newborn screening programs should consider opportunity costs).

47. See Baily and Murray, supra note 2, at 313.

48. Cf. Bowen v. Gilliard, 483 U.S 587, 598 (1987) (speaking of court review of government spending for the general welfare).

49. In re Interest of Anaya, 276 Neb. 825 (2008).


51. See Baily and Murray, supra note 2, at 111-112 and The President’s Council on Bioethics, supra note 1, at 73.


53. See National Newborn Screening and Genetics Resource Center, supra note 14.

currents in contemporary ethics : the role of parents in expanded newborn screening

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