Predictive Genetic Testing of Children and the Role of the Best Interest Standard: Currents in Contemporary Bioethics

National Research Council. Committee for the Study of Inborn Errors of Metabolism, Genetic Screening: Programs, Principles and Research (Washington, D.C.: National Academy of Sciences, 1975): At 23–43.

American Society of Human Genetics (ASHG) Board of Directors, American College of Medical Genetics (ACMG) Board of Directors, “Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents,” American Journal of Human Genetics 57, no. 5 (1995): 1233–1241;.

American Academy of Pediatrics (AAP) Committee on Bioethics, “Ethical Issues with Genetic Testing in Pediatrics,” Pediatrics 107, no. 6 (2001: 1451–1455;.

reaffirmed Pediatrics 115, no. 5 (2005): 1438 and Pediatrics 123, no. 5 (2009: 1421–1422;.

American Academy of Pediatrics (AAP) Committee on Bioethics and Committee on Genetics and the American College of Medical Genetics and Genomics Social, Ethical and Legal Issues Committee, “Policy Statement: Ethical and Policy Issues in Genetic Testing and Screening of Children,” Pediatrics 131, no. 3 (2013: 620–622;.

Ross L. F. Saal H. M. David K. L. Anderson R. R. , and the American Academy of Pediatrics (AAP) and the American College of Medical Genetics and Genomics (ACMG), “Technical Report: Ethical and Policy Issues in Genetic Testing and Screening of Children,” Genetics in Medicine 15, no. 3 (2013: 234–245;.

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and the British Society for Human Genetics (BSHG), Report on the Genetic Testing of Children (2010), Edgbaston Birmingham UK, at 1–22, available at <http://www.ethox.org.uk/Documents%20and%20images/GTOC_2010_BSHG.pdf> (last visited November 15, 2013).

Buchanan A. E. Brock D. W. , Deciding for Others: The Ethics of Surrogate Decision Making (New York: Cambridge University Press, 1990): At 10–11.

Salter E. K. , “Deciding for a Child: A Comprehensive Analysis of the Best Interest Standard,” Theoretical Medicine and Bioethics 33, no. 3 (2012): 179–198.

See Buchanan Brock , supra note 3, at 132–133;.

Salter , supra note 4;.

and Ross L. F. , Health Care Decision Making for Children (Oxford: Oxford University Press, 1998): At 111–117.

See Buchanan Brock , supra note 3, at 232–237;.

Salter supra note 4,

Ross , supra note 5, at 28–34;.

and Eekelaar J. , Family Law and Personal Life (Oxford: Oxford University Press, 2007): At 89–94 and at 103–105.

See Buchanan Brock , supra note 3, at 224–232;.

Salter supra note 4;.

Ross , supra note 5, at 47–50;.

Eekelaar , supra note 6, at 155–162.

See Buchanan Brock , supra note 3, at 94.

Beauchamp T. L. Childress J. F. , Principles of Biomedical Ethics, 4th ed. (New York: Oxford University Press, 1994): At 178.

Id., at 179.

See Buchanan Brock , supra note 3, at 235–237.

American Medical Association (AMA) Council on Ethical and Judicial Affairs (CEJA), Code of Medical Ethics of the American Medical Association: Current Opinions with Annotations, 2010–2011 Edition (Chicago: American Medical Association, 2010): “Opinion 8.081 - Surrogate Decision Making,” at 267–269, at 268.

British Medical Association (BMA), Consent, Rights and Choices in Health Care for Children and Young People (London: British Medical Journal Books, 2001): At 3.

Id., at 4.

Id., at 4.

See Buchanan Brock , supra note 3, at 10.

See Buchanan Brock , supra note 3, at 236.

Kopelman L. M. , “The Best-Interests Standard as Threshold, Ideal, and Standard of Reasonableness,” Journal of Medicine and Philosophy 22, no. 3 (1997): 271–289.

Blustein J. , “Doing the Best for One's Child: Satisficing versus Optimizing Parentalism,” Theoretical Medicine and Bioethics 33, no. 3 (2012): 199–205.

Id.

See Buchanan Brock , supra note 3, at 147–148;.

Salter , supra note 4.

See Ross , supra note 5, at 41 and 51.

Diekema D. , “Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention,” Theoretical Medicine and Bioethics,25, no. 4 (2004): 243–264.

Goldstein J. Freud A. Solnit A. J. , Before the Best Interests of the Child (New York: The Free Press, 1979): At 12.

Children's Act of 1989, at Part 1, Section 1.1 Welfare of the Child, available at <http://www.legislation.gov.uk/ukpga/1989/41/contents> (last visited November 15, 2013),.

Id., at Section 1 (3) a-f.

Office of the United Nations High Commission for Human Rights, “Convention on the Rights of the Child Adopted and Opened for Signature, Ratification and Accession by General Assembly resolution 44/25 of 20 November 1989 Entry into Force 2 September 1990, in Accordance with Article 49,” at Article 3.1, available at <http://www.ohchr.org/Documents/ProfessionalInterest/crc.pdf> (last visited November 15, 2013).

Id.

See Children's Act of 1989, supra note 25, at Part 1, Section 3.1.

Council of Europe, European Convention on Human Rights (as amended on 1 June 2010), available at <http://www.echr.coe.int/Documents/Convention_ENG.pdf> (last visited November 21, 2013).

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Bridge C. , “Religion, Culture and the Body of the Child,” in Bainhaim A. Sclater S. D. Richards M. , eds., Body Lore and Laws (Oxford: Hart Publishing, 2002): 265–288, at 275.

See ASHG/ACMG , supra note 2;.

AAP supra note 2;.

AAP and ACMG, supra note 2;.

Ross , supra note 2;.

Working Party, supra note 2;.

BSHG, supra note 2, at 6.

See Ross , supra note 2, 236, references omitted.

Id., at 238.

See BSHG, supra note 2, at 7.

Id., at 5.

Id, at 5.

MM (A Child) (Medical Treatment), Re Also known as: Family Division 25 October 1999 Case Analysis Where Reported [2000] 1 F.L.R. 224;. [2000] Fam. Law 92;. In re C. (A Child) (HIV testing) [family division] [2000] Fam 48;. and Re T (a minor) (wardship: Medical treatment) COURT OF APPEAL (CIVIL DIVISION) [1997] 1 WLR 242, [1997] 1 All ER 906, 35 BMLR 63, [1997] 1 FLR 503, [1997] 2 FCR 363, 96 LGR 116.

The case of MM (supra note 40) involves a child with immunodeficiency of Russian parents living in the U.K. The court orders him to be treated with immunoglobulin (IG) even though he was doing well on a less efficacious treatment that is used in Russia, in part, because they planned to return to Russia and did not think that IG would be readily available. The court ruled that their reasonable plan was not good enough.

The other 2 cases allow for compromise and some respect for family privacy. In re C (supra note 40) is a case in which the courts ruled to mandate HIV testing of an infant whose mother is HIV positive over parental objections. Although the court mandated testing, it did not forbid breast feeding, even though HIV transmission from breast milk is a well-documented risk: “the law cannot come between the baby and the breast” (In re C, supra note 40). Thus, it allowed for some parental discretion, even if it were not in the child's best interest. In this case, however, the parents fled the country before the mandated testing was performed. (See Bridgeman , supra note 32, at 152.).

The third case, Re T (supra note 40), involves an appeals court decision to overrule a lower court decision that would have authorized a liver transplant. Even though the health care team said it was in the child's best interest, the appeals court overturned the authorization stating it would not be in the child's best interest because:.

“The judge had failed to assess the relevance or the weight of the mother's concern as to the benefits to her child of the surgery and post-operative treatment, the dangers of failure both long term as well as short term, the possibility of the need for further transplants, the likely length of life and the effect on her child of all those concerns, together with the strong reservations expressed by one of the consultants about coercing the mother into playing a crucial part in the aftermath of the operation and thereafter” (see Re T, supra note 40.).

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See the Working Party, supra note 2;.

Wertz D. C. Reilly P. R. , “Laboratory Policies and Practices for the Genetic Testing of Children: A Survey of the Helix Network,” American Journal of Human Genetics 61, no. 5 (1997: 1163–1168;.

Michie S. McDonald V. Bobrow M. McKeown C. Marteau T. , “Parents' Responses to Predictive Genetic Testing in Their Children: Report of a Single Case Study,” Journal of Medical Genetics 33, no. 4 (1996: 313–318;.

Michie S. Bobrow M. Marteau T. M. , “Predictive Genetic Testing in Children and Adults: A Study of Emotional Impact,” Journal of Medical Genetics 38, no. 8 (2001: 519–526;.

Borry P. Goffin T. Nys H. Dierickx K. , “Attitudes Regarding Predictive Genetic Testing in Minors: A Survey of European Clinical Geneticists,” American Journal of Medical Genetics 148C (2008): 78–83;.

Rosen A. Wallenstein S. McGovern M. M. , “Attitudes of Pediatric Residents toward Ethical Issues Associated with Genetic Testing in Children,” Pediatrics 110, no. 2 (2002: 360–363.

Barnard J. , “Screening and Surveillance Recommendations for Pediatric Gastrointestinal Polyposis Syndromes,” Journal of Pediatric Gastroenterology and Nutrition 48, Supp. 2 (2009): S75–S78.

See BSHG, supra note 2 at 16;.

Ross , supra note 2, at 237–238.

See Kopelman , supra note 18;.

Blustein , supra note 19.

See BSHG, supra note 2, at 6 recommendation 5.

See Children's Act of 1989, supra note 25, at Part 1, Section 1.1 Welfare of the Child.

See Office of the United Nations High Commission for Human Rights, supra note 27.

See Eekelaar , supra note 5, at 158–159, and 161.

See supra note 44.

See Kopelman , supra note 18;.

Blustein , supra note 19.

See Office of the United Nations High Commission for Human Rights, supra note 27, at Article 2;.

Council of Europe, supra note 30, at Articles 5, 14 and 18.

Herman J. D. Appelbaum H. , “Hereditary Breast and Ovarian Cancer Syndrome and Issues in Pediatric and Adolescent Practice,” Journal of Pediatric and Adolescent Gynecology 23, no. 4 (2010): 253–258.

Christiaans I. Birnie E. Bonsel G. J. Wilde A. A. van Langen I. M. , “Uptake of Genetic Counselling and Predictive DNA Testing in Hypertrophic Cardiomyopathy,” European Journal of Human Genetics 16, no. 10 (2008): 1201–1207;.

Denayer L. Boogaerts A. Philippe K. Legius E. Evers-Kiebooms G. , “BRCA1/2 Predictive Testing and Gender: Uptake, Motivation, and Psychological Characteristics,” Genetic Counseling 20, no. 4 (2009): 293–305;

Forrest L. L. Delatycki M. Curnow L. Gen Couns M. Skene L. Aitken M. , “An Audit of Clinical Service Examining the Uptake of Genetic Testing by At-Risk Family Members,” Genetic Medicine 14, no. 1 (2012: 122–128;.

Chieng W. S. Lee S. C. , “Discrepancy between Initial High Expression of Interest in Clinical Cancer Genetic Testing and Actual Low Uptake in an Asian Population,” Genetic Testing and Molecular Biomarkers 16, no. 7 (2012: 785–793.

Davis D. S. , “Genetic Dilemmas and the Child's Right to an Open Future,” Hastings Center Report 27, no. 2 (1997): 7–15.

Duncan R. E. Delatycki M. B. , “Predictive Genetic Testing in Young People for Adult-Onset Conditions: Where Is the Empirical Evidence?” Clinical Genetics 69, no. 1 (2006): 8–16;.

Mand C. Gillam L. Delatycki M. B. Duncan R. E. , “Predictive Genetic Testing in Minors for Late-Onset Conditions: A Chronological and Analytical Review of the Ethical Arguments,” Journal of Medical Ethics 38, no. 9 (2012: 519–524;.

Wilfond B. Ross L. F. , “From Genetics to Genomics: Ethics, Policy, and Parental Decision-Making,” Journal of Pediatric Psychology 34, no. 6 (2009: 639–647.

See Duncan Delatycki , supra note 58; and Mand , supra note 58.

See Wilfond Ross , supra note 58;.

Lavery C. , “On the Receiving End of Genetic Medicine,” in Clarke A. , ed., The Genetic Testing of Children (London: Academic Press, 1998): 47–50, at 49;.

and Wertz D. C. , “International Perspectives,” in Clarke A. , ed., The Genetic Testing of Children (London: Academic Press, 1998): 271–285, at 284.

European Society of Human Genetics (ESHG), “Statement of the ESHG on Direct-to-Consumer Genetic Testing for Health-Related Purposes,” European Journal of Human Genetics 18, no. 12 (2010: 1271–1273;.

American College of Medicine Genetics (ACMG) Board of Directors, “ACMG Statement on Direct-to-Consumer Genetic Testing,” Genetics in Medicine 6, no. 1 (2004): 60.

Howard H. C. Avard D. Borry P. , “Are the Kids Really All Right? Direct-to-Consumer Genetic Testing in Children: Are Company Policies Clashing with Professional Norms?” European Journal of Human Genetics19, no. 11 (2011): 1122–1126.

See AAP and ACMG, supra note 2, at 621 (point 8);

Ross , supra note 2 at 238;.

BSHG, supra note 2, at 6 recommendation 5.

See Ross , supra note 2, at 238.

See ASHG/ACMG, supra note 2, at 1238.

See AAP and ACMG, supra note 2, at 621 (point 10); Ross , supra note 2, at 238.

Gillick v. West Norfolk and Wisbech Area Health Authority and another [1986] 1 AC 112, [1985] 3 All ER 402, [1985] 3 WLR 830, [1986] 1 FLR 224, [1986] Crim LR 113, 2 BMLR 11.