Publication

Medical Research Involving Children - Giving Weight to Children's Views

Dorscheidt, J. H. H. M. & Hein, I. M., 2018, In : International journal of childrens rights. 26, 1, p. 93-116 24 p.

Research output: Contribution to journalArticleAcademicpeer-review

APA

Dorscheidt, J. H. H. M., & Hein, I. M. (2018). Medical Research Involving Children - Giving Weight to Children's Views. International journal of childrens rights, 26(1), 93-116. https://doi.org/10.1163/15718182-02601006

Author

Dorscheidt, Jozef H. H. M. ; Hein, Irma M. / Medical Research Involving Children - Giving Weight to Children's Views. In: International journal of childrens rights. 2018 ; Vol. 26, No. 1. pp. 93-116.

Harvard

Dorscheidt, JHHM & Hein, IM 2018, 'Medical Research Involving Children - Giving Weight to Children's Views', International journal of childrens rights, vol. 26, no. 1, pp. 93-116. https://doi.org/10.1163/15718182-02601006

Standard

Medical Research Involving Children - Giving Weight to Children's Views. / Dorscheidt, Jozef H. H. M.; Hein, Irma M.

In: International journal of childrens rights, Vol. 26, No. 1, 2018, p. 93-116.

Research output: Contribution to journalArticleAcademicpeer-review

Vancouver

Dorscheidt JHHM, Hein IM. Medical Research Involving Children - Giving Weight to Children's Views. International journal of childrens rights. 2018;26(1):93-116. https://doi.org/10.1163/15718182-02601006


BibTeX

@article{04a23eaf393443c3b38d4bc44709aac8,
title = "Medical Research Involving Children - Giving Weight to Children's Views",
abstract = "The quality of health care for children depends much on the availability of relevant results from medical research with children as subjects. Yet, because of their vulnerability and assumed incompetence to take part in decision-making, children have often been excluded from taking part in medical research, so as to prevent them from harm. Empirical data on children's competence to consent to such research used to be rare, but recent developments in this field have created more insights in the myths and realities concerning minor patients' capacities to decide on medical research participation. Against the background of relevant international, European and domestic legal frameworks concerning the rights of children as participants in medical research, this article goes into instruments such as MacCAT-CR, a semi-structured interview format useable as a competence assessment tool for clinical research involving children. On the basis of this, several recommendations are defined to enhance such research, as these may do sufficient justice to the health interests and the capacities of children, while at the same time supporting researchers and child research participants when facing decisions about pediatric research options.",
keywords = "medical research involving children, pediatric research, research participation, children's competence, child decision making, competence assessment tool/MacCAT-CR, children's views, CLINICAL-RESEARCH, INFORMED-CONSENT, COMPETENCE, ASSENT, MINORS",
author = "Dorscheidt, {Jozef H. H. M.} and Hein, {Irma M.}",
year = "2018",
doi = "10.1163/15718182-02601006",
language = "English",
volume = "26",
pages = "93--116",
journal = "International journal of childrens rights",
issn = "0927-5568",
publisher = "BRILL ACADEMIC PUBLISHERS",
number = "1",

}

RIS

TY - JOUR

T1 - Medical Research Involving Children - Giving Weight to Children's Views

AU - Dorscheidt, Jozef H. H. M.

AU - Hein, Irma M.

PY - 2018

Y1 - 2018

N2 - The quality of health care for children depends much on the availability of relevant results from medical research with children as subjects. Yet, because of their vulnerability and assumed incompetence to take part in decision-making, children have often been excluded from taking part in medical research, so as to prevent them from harm. Empirical data on children's competence to consent to such research used to be rare, but recent developments in this field have created more insights in the myths and realities concerning minor patients' capacities to decide on medical research participation. Against the background of relevant international, European and domestic legal frameworks concerning the rights of children as participants in medical research, this article goes into instruments such as MacCAT-CR, a semi-structured interview format useable as a competence assessment tool for clinical research involving children. On the basis of this, several recommendations are defined to enhance such research, as these may do sufficient justice to the health interests and the capacities of children, while at the same time supporting researchers and child research participants when facing decisions about pediatric research options.

AB - The quality of health care for children depends much on the availability of relevant results from medical research with children as subjects. Yet, because of their vulnerability and assumed incompetence to take part in decision-making, children have often been excluded from taking part in medical research, so as to prevent them from harm. Empirical data on children's competence to consent to such research used to be rare, but recent developments in this field have created more insights in the myths and realities concerning minor patients' capacities to decide on medical research participation. Against the background of relevant international, European and domestic legal frameworks concerning the rights of children as participants in medical research, this article goes into instruments such as MacCAT-CR, a semi-structured interview format useable as a competence assessment tool for clinical research involving children. On the basis of this, several recommendations are defined to enhance such research, as these may do sufficient justice to the health interests and the capacities of children, while at the same time supporting researchers and child research participants when facing decisions about pediatric research options.

KW - medical research involving children

KW - pediatric research

KW - research participation

KW - children's competence

KW - child decision making

KW - competence assessment tool/MacCAT-CR

KW - children's views

KW - CLINICAL-RESEARCH

KW - INFORMED-CONSENT

KW - COMPETENCE

KW - ASSENT

KW - MINORS

U2 - 10.1163/15718182-02601006

DO - 10.1163/15718182-02601006

M3 - Article

VL - 26

SP - 93

EP - 116

JO - International journal of childrens rights

JF - International journal of childrens rights

SN - 0927-5568

IS - 1

ER -

ID: 67863132