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48 - Legal issues for HIV-infected children

from Part VI - Medical, social, and legal issues

Published online by Cambridge University Press:  03 February 2010

By
Carolyn McAllaster
Edited by
Steven L. Zeichner  and
Jennifer S. Read
Carolyn McAllaster
Affiliation:
Professor of Law, Duke University School of Law, Box 90360, Durham, NC
Steven L. Zeichner
Affiliation:
National Cancer Institute, Bethesda, Maryland
Jennifer S. Read
Affiliation:
National Cancer Institute, Bethesda, Maryland
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Summary

Introduction

HIV-infected children face a host of issues, many of which involve the legal system. These children often need to have future plans made for their care, or they may want to apply for government benefits or to participate in clinical trials. This chapter is designed to describe some common legal issues confronting the HIV-infected child in the USA. Each country will have different legal approaches to the subjects discussed in this chapter. The USA legal response to the needs of HIV-infected children is illustrative of how one legal system has dealt with the issues discussed here.

Permanent custody planning for children

Introduction

Since the vast majority of HIV-infected children have a mother who is also infected, it is important that plans be made for a time when the mother either becomes unable to care for her child or dies. Permanency planning is the process by which plans are made for the long-term legal custody or adoption of children at risk of losing their custodial parent or guardian. Such plans are particularly important when the HIV-infected parent is a single parent.

The ideal custody plan includes the identification of a stable future guardian who: (a) already has a bond with the child; (b) has the physical, emotional, and financial ability to care for the child; (c) has a long-term commitment to the child; and (d) understands and is willing to meet the special needs of an HIV-infected child.

Type
Chapter
Information
Textbook of Pediatric HIV Care , pp. 677 - 682
Publisher: Cambridge University Press
Print publication year: 2005

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References

Ark. Code Ann. §28-65-221 (LexisNexis Supp. 2001); Cal. Prob. Code §2105 (West Supp. 2002); Colo. Rev. Stat. Ann. §15-14-202 (2) (Bradford Publishing 2001); Conn. Gen. Stat. §§45a-624 to 625 (West Supp. 2002); Fla. Stat. §744.304 (West Supp. 2002); Ill. Comp. Stat. Ann ch. 755 §5/11–5.3 (West Supp. 2002); Mass. Gen. Laws Ann. ch, 201 §§2A-2H (LexisNexis Supp. 2002); Md. Code Ann., Est. & Trusts §§13–901 to 908 (Lexis 2001); Minn. Stat. Ann. §§257B.01- 257B.10 (West Supp. 2002); Neb. Rev. Stat. §30-2608 (Lexis 2001); N.J. Rev. Stat. §§3B:12–67 to 78 (West Supp. 2001): N.Y. Surr. Ct. Proc. Act §§1726 (West 2001–2002); N. C.Gen. Stat. §§35A-1370 to 1382 (West 2000); Pa. Con. Stat. Ann. ch. 23 §§5601–5616 (West 2001); Va. Code Ann. §§16.1-349 to 355 (Michie 1999); W. Va. Code §§44A-5-1 (LexisNexis Supp. 2001); Wis. Stat. Ann. §48.978 (West Supp. 2001)
42 U.S.C.A. §670 et seq
42 U.S.C.A. §671(a)(19)
Personal Responsibility and Work Opportunity Reconciliation Act of 1996, Pub.L.No. 104–193 (1996)
20 C.F.R. pt. 404, subpt. P, App. 1, Part B, §114.08 (2002)
20 C.F.R. pt. 404, subpt. P, App. 1, Part B, §114 D.8 (2002)
See, for example, N.M. Stat. Ann. §§32A-21-1 to -21-7 (Michie 1999); Cal. Fam. Code §7001 et seq. (West 1994)
See, for example, N.C.G.S. §90-21.5 (West 2000)
Mnookin, R. H. & Weisberg, D. K. Child, Family and State, 3rd edn. Little, Brown and Company (1995), pp. 558–61
For research not involving greater than minimal risk, or for research involving greater than minimal risk but presenting the prospect of direct benefit to the individual subjects, the permission of only one parent is necessary. For research involving greater than minimal risk and no prospect of direct benefit to the subject, but likely to yield generalizable knowledge about the subject's disorder or condition, or for research not otherwise approvable which presents an opportunity to understand, prevent, or alleviate a serious problem affecting the health or welfare of children, the permission of both parents is required, “unless one parent is deceased, unknown, incompetent, or not reasonably available, or when only one parent has legal responsibility for the care and custody of the child.” 45 C.F.R. §46.408(b)
Assent is defined as “a child's affirmative agreement to participate in research. Mere failure to object should not, absent affirmative agreement, be construed as assent.” 45 C.F.R. §46.402(b). “In determining whether children are capable of assenting, the Institutional Review Board shall take into account the ages, maturity and psychological state of the children involved.” 45 C.F.R. §46.408(a)
SeeMartin & Sacks, , Do Human Immunodeficiency Virus-Infected Children in Foster Care Have Access to Clinical Trials of New Treatments?, 5 Acquired Immune Deficiency Syndrome Pub. Policy J. 3 (1990)Google Scholar
McNutt, , The Under-Enrollment of Human Immunodeficiency Virus-Infected Foster Children in Clinical Trials and Protocols and the need for Corrective State Action, 20Am. J. Law Med. 231 (1994)Google Scholar

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