People in different professional, geographical, or cultural groups are often confused by each other's use of language. Some groups use different words to mean the same thing. Others use the same word but interpret it in different ways. Since this publication is aimed at people working with children and adolescents in a variety of settings, sensitivity and clear communication are required. This section explains technical words and related terms used within this document. Abuse: anything that individuals or institutions do or fail to do that directly or indirectly harms children or damages their prospects for safe and healthy development Additional consent: consent required from adults working with children, such as teachers, clergy, youth workers, and others, to gain access to gather information from children (see Guideline E1) Adolescent: individual in the state of development between the onset of puberty and maturity; definitions vary according to culture and custom (WHO definition is from age 10 through age 19) Age of consent: age at which an individual may give consent to sexual activity with another person Age of majority: age at which an individual becomes a legal adult and gains full legal rights, such as the right to vote Anonymity: conditions under which the identity of the participant is not collected and cannot be traced from the information provided (see Guideline D3) Assent: affirmative agreement of a child (see Guideline E1) Child advocate: independent adult appointed to represent the best interests of a child who cannot legally give consent (see Guideline E4) Child or minor: individual younger than age 18; definitions vary according to culture and custom Community advisory board: committee of local community members and stakeholders responsible for overseeing the design and conduct of activities to protect participants from harm and ensuring that activities are culturally acceptable locally and in accordance with ethical standards; also known as local advisory board (see Part 1, Section 4, and Guideline C3) Confidentiality: conditions under which the information revealed by an individual participant in a relationship of trust will not be disclosed to others without permission (see Guidelines D3 and D7) Consent: affirmative agreement of an individual who has reached the legal age of majority (see Guideline E1) Dissent: disagreement; withholding of consent (see Guideline E1) Do no harm: basic ethical principle stating that the primary concern must always be to protect the participant from harm (see Part 1, Section 1) Ethical standards: principles used to resolve questions that invoke responsibilities for the welfare of others or conflicts among loyalties to different groups Preface iv ! Ethical Approaches to Gathering Information from Children and Adolescents in International Settings Using this publication vi ! Ethical Approaches to Gathering Information from Children and Adolescents in International Settings Using this Publication Aims This publication aims to: • Provide practical guidance to help p...
We describe an outbreak of human rhinovirus type C infection in 7 infants in our neonatal/pediatric intensive care unit. Five infants had clinically significant apneic episodes and 5 required increased oxygen or ventilatory support. Infants shed virus detectable by polymerase chain reaction for a median of 4 weeks.
Program managers and researchers promoting children's rights to health, education, and an adequate standard of living often gather data directly from children to assess their needs and develop responsive services. Gathering information within a participatory framework recognizing children's views contributes to protection of their rights. Extra precautions, however, are needed to protect children because of the vulnerabilities associated with their developmental needs. Using case studies of ethical challenges faced by program implementers and sociobehavioral researchers, this article explores ways in which data collection activities among children may affect their rights. We suggest ways in which rights-based principles may be used to derive safeguards to protect against unintentional harm and abuses, based on a multidisciplinary consultation with researchers and service providers.
Key Points• BCR-ABL1 rearrangement as a subclonal change in ETV6-RUNX1-positive B-ALL is a rare occurrence not previously reported.• The prognosis of this rare subclonal change has not been determined, yet inclusion of tyrosine kinase inhibitors in treatment is ubiquitous.We report here on a case of ETV6-RUNX1-positive B-cell acute lymphoblastic leukemia (B-ALL) that has acquired a BCR-ABL1 gene rearrangement as a subclonal change. The 19-year-old female patient presented with B symptoms, pancytopenia, and circulating blasts.The bone marrow aspirate was hypercellular and was infiltrated by an immature blast population that was confirmed as B-ALL by flow cytometry. Sequential fluorescent in situ hybridization was performed on the patient's leukemic cells, which were shown to contain both ETV6-RUNX1 and BCR-ABL1 gene rearrangements. The majority of nuclei (85%) showed only the ETV6-RUNX1 gene rearrangement; however, an additional 10% also showed a variant BCR-ABL1 gene rearrangement, indicating the ETV6-RUNX1 gene rearrangement was the primary change. A review of the literature has shown that acquisition of a BCR-ABL1 gene rearrangement as a secondary change in B-ALL is a very rare occurrence, and the effect it may have on prognosis is uncertain in the modern therapy age.
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