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The return of individual research findings in paediatric genetic research

The combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two di... Full description

Journal Title: Journal of medical ethics 2011-03, Vol.37 (3), p.179-183
Main Author: Hens, Kristien
Other Authors: Nys, Herman , Cassiman, Jean-Jacques , Dierickx, Kris
Format: Electronic Article Electronic Article
Language: English
Subjects:
Age
Quelle: Alma/SFX Local Collection
Publisher: England: BMJ Publishing Group Ltd and Institute of Medical Ethics
ID: ISSN: 0306-6800
Link: https://www.ncbi.nlm.nih.gov/pubmed/21059631
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title: The return of individual research findings in paediatric genetic research
format: Article
creator:
  • Hens, Kristien
  • Nys, Herman
  • Cassiman, Jean-Jacques
  • Dierickx, Kris
subjects:
  • 4 External
  • Adolescent
  • Age
  • Age Factors
  • Autonomy
  • Bioethics
  • Biological specimen banks
  • Child
  • Child, Preschool
  • Children
  • Children & youth
  • Communication
  • Databases, Genetic - ethics
  • Demographic aspects
  • Duty to Recontact - ethics
  • Duty to Recontact - legislation & jurisprudence
  • Epidemiology
  • Ethical aspects
  • Ethics
  • Female
  • Genetic research
  • Genetic Research - ethics
  • Genetic Research - legislation & jurisprudence
  • Genetic Testing
  • genetics
  • Health Knowledge, Attitudes, Practice
  • Human genetics
  • Humans
  • Infant
  • Informed Consent - ethics
  • Informed Consent - legislation & jurisprudence
  • Male
  • Medical genetics
  • Medical research
  • minors
  • minors/parental consent
  • newborns and minors
  • Parents - psychology
  • Patient Rights - ethics
  • Pediatrics
  • Research ethics
  • Research Subjects
  • Researchers
  • return of results
  • scientific research
  • solidarity
  • Standards
  • Studies
  • Tissue samples
  • Truth Disclosure - ethics
ispartof: Journal of medical ethics, 2011-03, Vol.37 (3), p.179-183
description: The combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant’s autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher’s primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project.
language: eng
source: Alma/SFX Local Collection
identifier: ISSN: 0306-6800
fulltext: fulltext
issn:
  • 0306-6800
  • 1473-4257
url: Link


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descriptionThe combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant’s autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher’s primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project.
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subject4 External ; Adolescent ; Age ; Age Factors ; Autonomy ; Bioethics ; Biological specimen banks ; Child ; Child, Preschool ; Children ; Children & youth ; Communication ; Databases, Genetic - ethics ; Demographic aspects ; Duty to Recontact - ethics ; Duty to Recontact - legislation & jurisprudence ; Epidemiology ; Ethical aspects ; Ethics ; Female ; Genetic research ; Genetic Research - ethics ; Genetic Research - legislation & jurisprudence ; Genetic Testing ; genetics ; Health Knowledge, Attitudes, Practice ; Human genetics ; Humans ; Infant ; Informed Consent - ethics ; Informed Consent - legislation & jurisprudence ; Male ; Medical genetics ; Medical research ; minors ; minors/parental consent ; newborns and minors ; Parents - psychology ; Patient Rights - ethics ; Pediatrics ; Research ethics ; Research Subjects ; Researchers ; return of results ; scientific research ; solidarity ; Standards ; Studies ; Tissue samples ; Truth Disclosure - ethics
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descriptionThe combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant’s autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher’s primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project.
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abstractThe combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant’s autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher’s primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project.
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