Nondisclosure of human immunodeficiency virus and hepatitis C virus coinfection in a patient with hemophilia: Medical and ethical considerations

R. Kulkarni, A. B. Scott-Emuakpor, H. Brody, W. B. Weil, M. V. Ragni, R. Gera

Research output: Contribution to journalArticle

4 Citations (Scopus)

Abstract

This article discusses a medical and ethical dilemma: whether to disclose a positive HIV (human immunodeficiency virus)/HCV (hepatitis C virus) coinfection to an adolescent boy without symptoms with hemophilia despite the objections of his parents. An actual case history is presented and the dilemma faced by the medical team is discussed. Numerous family conferences, all excluding the patient, held during the last 5 years discussed the medical team's obligation for full disclosure, the emerging autonomy of the patient, and the potential for medical disaster (e.g., HIV transmission) if full disclosure were not permitted. Despite this, the family did not agree to allow disclosure. The patient and parents assured us of his sexual inactivity. Legal opinion was sought from the university counsel. The dilemmas are multiple. Is there a convincing argument to insist on disclosure of these facts to this patient, particularly when there is ambiguity regarding the appropriateness of HIV and HCV treatment? Does the ethical argument that he is at potential risk for transmitting HIV/HCV outweigh the rights of the family? What are the rights of the rest of the family? What are the rights of the minor? Is it our ethical responsibility to disclose a probably fatal diagnosis?

Original languageEnglish (US)
Pages (from-to)153-158
Number of pages6
JournalJournal of Pediatric Hematology/Oncology
Volume23
Issue number3
DOIs
StatePublished - 2001
Externally publishedYes

Fingerprint

Disclosure
Hemophilia A
Coinfection
Hepacivirus
HIV
Parents
Disasters
Therapeutics

Keywords

  • Autonomy
  • Coinfection
  • Confidentiality
  • Disclosure
  • Ethics
  • HCV
  • HIV

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Oncology
  • Hematology

Cite this

Nondisclosure of human immunodeficiency virus and hepatitis C virus coinfection in a patient with hemophilia : Medical and ethical considerations. / Kulkarni, R.; Scott-Emuakpor, A. B.; Brody, H.; Weil, W. B.; Ragni, M. V.; Gera, R.

In: Journal of Pediatric Hematology/Oncology, Vol. 23, No. 3, 2001, p. 153-158.

Research output: Contribution to journalArticle

Kulkarni, R. ; Scott-Emuakpor, A. B. ; Brody, H. ; Weil, W. B. ; Ragni, M. V. ; Gera, R. / Nondisclosure of human immunodeficiency virus and hepatitis C virus coinfection in a patient with hemophilia : Medical and ethical considerations. In: Journal of Pediatric Hematology/Oncology. 2001 ; Vol. 23, No. 3. pp. 153-158.
@article{f9daadec4c4f41bc8bc47f7c82f5e853,
title = "Nondisclosure of human immunodeficiency virus and hepatitis C virus coinfection in a patient with hemophilia: Medical and ethical considerations",
abstract = "This article discusses a medical and ethical dilemma: whether to disclose a positive HIV (human immunodeficiency virus)/HCV (hepatitis C virus) coinfection to an adolescent boy without symptoms with hemophilia despite the objections of his parents. An actual case history is presented and the dilemma faced by the medical team is discussed. Numerous family conferences, all excluding the patient, held during the last 5 years discussed the medical team's obligation for full disclosure, the emerging autonomy of the patient, and the potential for medical disaster (e.g., HIV transmission) if full disclosure were not permitted. Despite this, the family did not agree to allow disclosure. The patient and parents assured us of his sexual inactivity. Legal opinion was sought from the university counsel. The dilemmas are multiple. Is there a convincing argument to insist on disclosure of these facts to this patient, particularly when there is ambiguity regarding the appropriateness of HIV and HCV treatment? Does the ethical argument that he is at potential risk for transmitting HIV/HCV outweigh the rights of the family? What are the rights of the rest of the family? What are the rights of the minor? Is it our ethical responsibility to disclose a probably fatal diagnosis?",
keywords = "Autonomy, Coinfection, Confidentiality, Disclosure, Ethics, HCV, HIV",
author = "R. Kulkarni and Scott-Emuakpor, {A. B.} and H. Brody and Weil, {W. B.} and Ragni, {M. V.} and R. Gera",
year = "2001",
doi = "10.1097/00043426-200103000-00006",
language = "English (US)",
volume = "23",
pages = "153--158",
journal = "Journal of Pediatric Hematology/Oncology",
issn = "1077-4114",
publisher = "Lippincott Williams and Wilkins",
number = "3",

}

TY - JOUR

T1 - Nondisclosure of human immunodeficiency virus and hepatitis C virus coinfection in a patient with hemophilia

T2 - Medical and ethical considerations

AU - Kulkarni, R.

AU - Scott-Emuakpor, A. B.

AU - Brody, H.

AU - Weil, W. B.

AU - Ragni, M. V.

AU - Gera, R.

PY - 2001

Y1 - 2001

N2 - This article discusses a medical and ethical dilemma: whether to disclose a positive HIV (human immunodeficiency virus)/HCV (hepatitis C virus) coinfection to an adolescent boy without symptoms with hemophilia despite the objections of his parents. An actual case history is presented and the dilemma faced by the medical team is discussed. Numerous family conferences, all excluding the patient, held during the last 5 years discussed the medical team's obligation for full disclosure, the emerging autonomy of the patient, and the potential for medical disaster (e.g., HIV transmission) if full disclosure were not permitted. Despite this, the family did not agree to allow disclosure. The patient and parents assured us of his sexual inactivity. Legal opinion was sought from the university counsel. The dilemmas are multiple. Is there a convincing argument to insist on disclosure of these facts to this patient, particularly when there is ambiguity regarding the appropriateness of HIV and HCV treatment? Does the ethical argument that he is at potential risk for transmitting HIV/HCV outweigh the rights of the family? What are the rights of the rest of the family? What are the rights of the minor? Is it our ethical responsibility to disclose a probably fatal diagnosis?

AB - This article discusses a medical and ethical dilemma: whether to disclose a positive HIV (human immunodeficiency virus)/HCV (hepatitis C virus) coinfection to an adolescent boy without symptoms with hemophilia despite the objections of his parents. An actual case history is presented and the dilemma faced by the medical team is discussed. Numerous family conferences, all excluding the patient, held during the last 5 years discussed the medical team's obligation for full disclosure, the emerging autonomy of the patient, and the potential for medical disaster (e.g., HIV transmission) if full disclosure were not permitted. Despite this, the family did not agree to allow disclosure. The patient and parents assured us of his sexual inactivity. Legal opinion was sought from the university counsel. The dilemmas are multiple. Is there a convincing argument to insist on disclosure of these facts to this patient, particularly when there is ambiguity regarding the appropriateness of HIV and HCV treatment? Does the ethical argument that he is at potential risk for transmitting HIV/HCV outweigh the rights of the family? What are the rights of the rest of the family? What are the rights of the minor? Is it our ethical responsibility to disclose a probably fatal diagnosis?

KW - Autonomy

KW - Coinfection

KW - Confidentiality

KW - Disclosure

KW - Ethics

KW - HCV

KW - HIV

UR - http://www.scopus.com/inward/record.url?scp=0035061489&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=0035061489&partnerID=8YFLogxK

U2 - 10.1097/00043426-200103000-00006

DO - 10.1097/00043426-200103000-00006

M3 - Article

C2 - 11305718

AN - SCOPUS:0035061489

VL - 23

SP - 153

EP - 158

JO - Journal of Pediatric Hematology/Oncology

JF - Journal of Pediatric Hematology/Oncology

SN - 1077-4114

IS - 3

ER -