Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective

Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children. Ausführliche Beschreibung

Gespeichert in:

Autor*in:	Yasue Fukuda [verfasserIn] Koji Fukuda [verfasserIn]

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2018

Schlagwörter:	Children Minors Medical treatment Medical research Informed consent Informed assent

Übergeordnetes Werk:	In: BMC Medical Ethics - BMC, 2003, 19(2018), 1, Seite 8
Übergeordnetes Werk:	volume:19 ; year:2018 ; number:1 ; pages:8

Links:	Link aufrufen Link aufrufen Link aufrufen Journal toc

DOI / URN:	10.1186/s12910-018-0330-1

Katalog-ID:	DOAJ019690460

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520			\|a Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children.
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allfields	10.1186/s12910-018-0330-1 doi (DE-627)DOAJ019690460 (DE-599)DOAJc63d8fdb75d64847909fa6361566c022 DE-627 ger DE-627 rakwb eng R723-726 Yasue Fukuda verfasserin aut Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children. Children Minors Medical treatment Medical research Informed consent Informed assent Medical philosophy. Medical ethics Koji Fukuda verfasserin aut In BMC Medical Ethics BMC, 2003 19(2018), 1, Seite 8 (DE-627)326645403 (DE-600)2041552-7 14726939 nnns volume:19 year:2018 number:1 pages:8 https://doi.org/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/article/c63d8fdb75d64847909fa6361566c022 kostenfrei http://link.springer.com/article/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/toc/1472-6939 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 19 2018 1 8
spelling	10.1186/s12910-018-0330-1 doi (DE-627)DOAJ019690460 (DE-599)DOAJc63d8fdb75d64847909fa6361566c022 DE-627 ger DE-627 rakwb eng R723-726 Yasue Fukuda verfasserin aut Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children. Children Minors Medical treatment Medical research Informed consent Informed assent Medical philosophy. Medical ethics Koji Fukuda verfasserin aut In BMC Medical Ethics BMC, 2003 19(2018), 1, Seite 8 (DE-627)326645403 (DE-600)2041552-7 14726939 nnns volume:19 year:2018 number:1 pages:8 https://doi.org/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/article/c63d8fdb75d64847909fa6361566c022 kostenfrei http://link.springer.com/article/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/toc/1472-6939 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 19 2018 1 8
allfields_unstemmed	10.1186/s12910-018-0330-1 doi (DE-627)DOAJ019690460 (DE-599)DOAJc63d8fdb75d64847909fa6361566c022 DE-627 ger DE-627 rakwb eng R723-726 Yasue Fukuda verfasserin aut Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children. Children Minors Medical treatment Medical research Informed consent Informed assent Medical philosophy. Medical ethics Koji Fukuda verfasserin aut In BMC Medical Ethics BMC, 2003 19(2018), 1, Seite 8 (DE-627)326645403 (DE-600)2041552-7 14726939 nnns volume:19 year:2018 number:1 pages:8 https://doi.org/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/article/c63d8fdb75d64847909fa6361566c022 kostenfrei http://link.springer.com/article/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/toc/1472-6939 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 19 2018 1 8
allfieldsGer	10.1186/s12910-018-0330-1 doi (DE-627)DOAJ019690460 (DE-599)DOAJc63d8fdb75d64847909fa6361566c022 DE-627 ger DE-627 rakwb eng R723-726 Yasue Fukuda verfasserin aut Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children. Children Minors Medical treatment Medical research Informed consent Informed assent Medical philosophy. Medical ethics Koji Fukuda verfasserin aut In BMC Medical Ethics BMC, 2003 19(2018), 1, Seite 8 (DE-627)326645403 (DE-600)2041552-7 14726939 nnns volume:19 year:2018 number:1 pages:8 https://doi.org/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/article/c63d8fdb75d64847909fa6361566c022 kostenfrei http://link.springer.com/article/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/toc/1472-6939 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 19 2018 1 8
allfieldsSound	10.1186/s12910-018-0330-1 doi (DE-627)DOAJ019690460 (DE-599)DOAJc63d8fdb75d64847909fa6361566c022 DE-627 ger DE-627 rakwb eng R723-726 Yasue Fukuda verfasserin aut Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children. Children Minors Medical treatment Medical research Informed consent Informed assent Medical philosophy. Medical ethics Koji Fukuda verfasserin aut In BMC Medical Ethics BMC, 2003 19(2018), 1, Seite 8 (DE-627)326645403 (DE-600)2041552-7 14726939 nnns volume:19 year:2018 number:1 pages:8 https://doi.org/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/article/c63d8fdb75d64847909fa6361566c022 kostenfrei http://link.springer.com/article/10.1186/s12910-018-0330-1 kostenfrei https://doaj.org/toc/1472-6939 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 19 2018 1 8
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Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. 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title_auth	Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective
abstract	Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children.
abstractGer	Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children.
abstract_unstemmed	Abstract Background Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children.
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title_short	Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective
url	https://doi.org/10.1186/s12910-018-0330-1 https://doaj.org/article/c63d8fdb75d64847909fa6361566c022 http://link.springer.com/article/10.1186/s12910-018-0330-1 https://doaj.org/toc/1472-6939
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author2	Koji Fukuda
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doi_str	10.1186/s12910-018-0330-1
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up_date	2024-07-04T00:35:07.057Z
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Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research. Methods A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined. Results Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied. Conclusions Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. 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