Proxy informed consent in pediatric research: A review

Research output: Contribution to journalArticle

13 Citations (Scopus)

Abstract

This paper is aimed at discussing the issue of proxy consent for medical research with children carried out in the context of developed countries. First, requirements for valid informed consent are reviewed, and differences with clinical practice highlighted. In the second part the findings from empirical studies, and implications for improving the consent process, are discussed. Perceived benefit for their child is the most important factor motivating parents to grant consent, but also a desire to contribute to medical research and benefit others are frequently mentioned. Abstract concepts such as randomization are more difficult to grasp and remember than practical issues. The type and style of the consent-seeking process (quality of the information, physician's attitude, allocated time, readability of consent forms) have an influence on how the invitation to participate is received. Rather than as a one-sided delivery of information, consent should be viewed as a continuous, two-way communication process developing in a context of transparency and partnership between the investigator and potential research subjects. Copyright (C) 2000 Elsevier Science Ireland Ltd.

Original languageEnglish
Pages (from-to)89-100
Number of pages12
JournalEarly Human Development
Volume60
Issue number2
DOIs
Publication statusPublished - 2000

Fingerprint

Proxy
Informed Consent
Biomedical Research
Pediatrics
Research Subjects
Consent Forms
Random Allocation
Research
Developed Countries
Parents
Communication
Research Personnel
Physicians

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

Cite this

Proxy informed consent in pediatric research : A review. / Cuttini, Marina.

In: Early Human Development, Vol. 60, No. 2, 2000, p. 89-100.

Research output: Contribution to journalArticle

@article{cbcfc374fd5048e6bb9bc358b319c84f,
title = "Proxy informed consent in pediatric research: A review",
abstract = "This paper is aimed at discussing the issue of proxy consent for medical research with children carried out in the context of developed countries. First, requirements for valid informed consent are reviewed, and differences with clinical practice highlighted. In the second part the findings from empirical studies, and implications for improving the consent process, are discussed. Perceived benefit for their child is the most important factor motivating parents to grant consent, but also a desire to contribute to medical research and benefit others are frequently mentioned. Abstract concepts such as randomization are more difficult to grasp and remember than practical issues. The type and style of the consent-seeking process (quality of the information, physician's attitude, allocated time, readability of consent forms) have an influence on how the invitation to participate is received. Rather than as a one-sided delivery of information, consent should be viewed as a continuous, two-way communication process developing in a context of transparency and partnership between the investigator and potential research subjects. Copyright (C) 2000 Elsevier Science Ireland Ltd.",
author = "Marina Cuttini",
year = "2000",
doi = "10.1016/S0378-3782(00)00106-7",
language = "English",
volume = "60",
pages = "89--100",
journal = "Early Human Development",
issn = "0378-3782",
publisher = "Elsevier Ireland Ltd",
number = "2",

}

TY - JOUR

T1 - Proxy informed consent in pediatric research

T2 - A review

AU - Cuttini, Marina

PY - 2000

Y1 - 2000

N2 - This paper is aimed at discussing the issue of proxy consent for medical research with children carried out in the context of developed countries. First, requirements for valid informed consent are reviewed, and differences with clinical practice highlighted. In the second part the findings from empirical studies, and implications for improving the consent process, are discussed. Perceived benefit for their child is the most important factor motivating parents to grant consent, but also a desire to contribute to medical research and benefit others are frequently mentioned. Abstract concepts such as randomization are more difficult to grasp and remember than practical issues. The type and style of the consent-seeking process (quality of the information, physician's attitude, allocated time, readability of consent forms) have an influence on how the invitation to participate is received. Rather than as a one-sided delivery of information, consent should be viewed as a continuous, two-way communication process developing in a context of transparency and partnership between the investigator and potential research subjects. Copyright (C) 2000 Elsevier Science Ireland Ltd.

AB - This paper is aimed at discussing the issue of proxy consent for medical research with children carried out in the context of developed countries. First, requirements for valid informed consent are reviewed, and differences with clinical practice highlighted. In the second part the findings from empirical studies, and implications for improving the consent process, are discussed. Perceived benefit for their child is the most important factor motivating parents to grant consent, but also a desire to contribute to medical research and benefit others are frequently mentioned. Abstract concepts such as randomization are more difficult to grasp and remember than practical issues. The type and style of the consent-seeking process (quality of the information, physician's attitude, allocated time, readability of consent forms) have an influence on how the invitation to participate is received. Rather than as a one-sided delivery of information, consent should be viewed as a continuous, two-way communication process developing in a context of transparency and partnership between the investigator and potential research subjects. Copyright (C) 2000 Elsevier Science Ireland Ltd.

UR - http://www.scopus.com/inward/record.url?scp=0033740087&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=0033740087&partnerID=8YFLogxK

U2 - 10.1016/S0378-3782(00)00106-7

DO - 10.1016/S0378-3782(00)00106-7

M3 - Article

C2 - 11121672

AN - SCOPUS:0033740087

VL - 60

SP - 89

EP - 100

JO - Early Human Development

JF - Early Human Development

SN - 0378-3782

IS - 2

ER -