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  • 1
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    Representation of Women in Published Articles at 3 Academic Pediatric Journals: 2001 to 2022
    American Academy of Pediatrics (AAP) ; 2023
    In:  Pediatrics Vol. 152, No. 4 ( 2023-10-01)
    Details
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 152, No. 4 ( 2023-10-01)
    Abstract: To evaluate the representation of women authors and editorial board members at 3 pediatric journals. METHODS We conducted a retrospective review of original research articles published in Pediatrics, The Journal of Pediatrics, and JAMA Pediatrics from 2001 to 2022. We analyzed five 1-year intervals and inferred the binary gender of authors by first name. Cochran-Armitage tests evaluated trends in gender proportion of authorship and editorial board membership over time. Pearson’s χ2 tests compared United States (US) authorship position and faculty rank as determined by Association of American Medical Colleges’ data. RESULTS From 2001 to 2022, 4426 original research articles were studied (exclusion rate & lt;1%). There was a 23.7%, 15.9%, and 28.8% increase in proportion of women as first authors, senior authors, and editorial board members globally, with all trends significant over time (P & lt; .01). In 2022, US women were 67.3% of first authors, only slightly lower than the 68.6% of women junior faculty (P = .01). US women were 48.0% of US senior authors, equivalent to the 47.5% of US women senior faculty (P = .18). US women represented 47.4% of US editorial board members, equivalent to their percentage as senior faculty (P = .98). CONCLUSIONS The percentage of US and international women authorship and editorial board membership has steadily increased. The percentage of US women as junior faculty and first authors is almost equivalent. The percentage of US women as senior faculty, senior authors, and editorial board members is equivalent but significantly reduced from their junior faculty representation.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    URL: Article
    DOI: 10.1542/peds.2023-062576
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2023
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  • 2
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    Ethical and Policy Issues in Newborn Screening
    American Academy of Pediatrics (AAP) ; 2009
    In:  NeoReviews Vol. 10, No. 2 ( 2009-02-01), p. e71-e81
    Details
    In: NeoReviews, American Academy of Pediatrics (AAP), Vol. 10, No. 2 ( 2009-02-01), p. e71-e81
    Abstract: Each year, millions of infants in the United States and around the world undergo a heel stick for NBS in the first postnatal week. It began in the early 1960s with an NBS program for phenylketonuria (PKU). Dr Robert Guthrie developed both the bacterial inhibition assay (BIA) to detect high concentrations of phenylalanine as well as the filter paper on which blood spots were collected to make high-volume screening possible. NBS expanded slowly throughout the 1970s and 1980s until the application of tandem mass spectrometry, which allows for multiplex testing for many organic acid and fatty acid conditions using one sample. The controversy over whether all of the conditions that can be identified by tandem mass spectrometry should be included in a universal mandatory program was bypassed in 2005 when the Advisory Committee on Heritable Disorders in Newborns and Children endorsed the uniform panel proposed by the American College of Medical Genetics(ACMG) in collaboration with the Health Resources and Services Administration (HRSA). This article reviews several ethical controversies raised by NBS programs, both those already in place (PKU, sickle cell disease, cystic fibrosis) and those under consideration (Duchenne muscular dystrophy, fragile X). Among the controversies are the question of informed consent, whether to disclose incidental discoveries such as carrier status, whether an efficacious treatment must exist, and when to screen universally or target testing to particular populations. Several unique features of NBS apply to infants in the neonatal intensive care unit (NICU), and NBS can employ technologies other than the Guthrie card (eg, hearing screening).
    Type of Medium: Online Resource
    ISSN: 1526-9906
    URL: Article
    DOI: 10.1542/neo.10-2-e71
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2009
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  • 3
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    Are Research Ethics Standards Satisfied in Pediatric Journal Publications?
    American Academy of Pediatrics (AAP) ; 2002
    In:  Pediatrics Vol. 110, No. 2 ( 2002-08-01), p. 364-370
    Details
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 110, No. 2 ( 2002-08-01), p. 364-370
    Abstract: Background. The requirements for institutional review board (IRB) review and informed consent (IC) for research involving human subjects have existed for more than 2 decades. Although many studies document them poorly, most published research undergoes IRB review and has IC procedures. Less is known about research published in pediatric journals, and how child health research is determined to be exempt. Method. All full-length articles published in the paper edition of 3 pediatric journals between January and December 2000 were examined. Articles were excluded if they were case studies, meta-analyses, lacked empirical data, or did not include at least 1 US researcher or US subjects. The remaining articles were examined to determine if they documented IRB review and IC mechanisms. If either or both of these features were missing, authors were asked to participate voluntarily in a survey. In addition, all exempt articles were examined to determine if the exemptions were in accordance with the federal regulations for the protection of human subjects. Results. Three hundred seventy-nine of 575 articles met inclusion criteria. One hundred ninety-seven (52.0%) documented IRB review, 164 (43.3%) documented IC, and 131 (34.6%) properly documented the presence of both IRB review and IC. Two hundred fifty-one researchers were surveyed to clarify IRB review and/or IC mechanisms. Approximately 13.5% of the research had not undergone IRB review, and 12.4% had not had their consent methods reviewed by an IRB. We found that between 26.9% and 39.8% of exempted research did not meet federal regulations requirements. Conclusions. We found that most research underwent IRB review and had a consent mechanism despite the lack of documentation in the articles. We also found that most research that did not undergo IRB review would have been exempt under current guidelines. However, a significant number of IRB- and researcher-exempted research were inappropriately classified. Improving research ethics standards will require additional education for researchers and IRB members, and greater adherence of researchers (and editors) to the journals’ guidelines on these issues.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    URL: Article
    DOI: 10.1542/peds.110.2.364
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2002
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  • 4
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    Minors as Living Solid-Organ Donors
    American Academy of Pediatrics (AAP) ; 2008
    In:  Pediatrics Vol. 122, No. 2 ( 2008-08-01), p. 454-461
    Details
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 122, No. 2 ( 2008-08-01), p. 454-461
    Abstract: In the past half-century, solid-organ transplantation has become standard treatment for a variety of diseases in children and adults. The major limitation for all transplantation is the availability of donors, and the gap between demand and supply continues to grow despite the increase in living donors. Although rare, children do serve as living donors, and these donations raise serious ethical issues. This clinical report includes a discussion of the ethical considerations regarding minors serving as living donors, using the traditional benefit/burden calculus from the perspectives of both the donor and the recipient. The report also includes an examination of the circumstances under which a minor may morally participate as a living donor, how to minimize risks, and what the informed-consent process should entail. The American Academy of Pediatrics holds that minors can morally serve as living organ donors but only in exceptional circumstances when specific criteria are fulfilled.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    URL: Article
    DOI: 10.1542/peds.2008-1525
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2008
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  • 5
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    Ethics and Professionalism in the Pediatric Curriculum: A Survey of Pediatric Program Directors
    American Academy of Pediatrics (AAP) ; 2009
    In:  Pediatrics Vol. 124, No. 4 ( 2009-10-01), p. 1143-1151
    Details
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 124, No. 4 ( 2009-10-01), p. 1143-1151
    Abstract: OBJECTIVE: Since 1982, pediatric residency programs have been asked to evaluate trainees for ethical behavior. In 2007, the Accreditation Council for Graduate Medical Education required documenting teaching and evaluation of professionalism. Pediatric residency program directors were surveyed to ascertain what they know about the content and process of their ethics and professionalism curricula. METHODS: From February to May 2008, 394 program directors from the Association of Pediatric Program Directors were surveyed. RESULTS: Of 386 eligible survey respondents, 233 (60%) returned partial or complete surveys. Programs were evenly divided on whether ethics was taught as an organized curriculum or integrated. Professionalism was combined with the ethics curriculum in 27% of programs and taught independently in 38% of programs, but 35% had no professionalism curriculum. More than one third of the respondents did not answer each content and structure question. Approximately two thirds of those who responded stated that their program dedicated & lt;10 hours per year to ethics and professionalism, respectively. Nearly three fourth of programs identified crowding of the curriculum and one third identified lack of faculty expertise as curricular constraints. Respondents expressed interest in more curricular materials from the American Board of Pediatrics or Association of Pediatric Program Directors. CONCLUSIONS: Despite requirements to train and evaluate residents in ethics and professionalism, there is a lack of structured curriculum, faculty expertise, and evaluation methodology. Effectiveness of training curricula and evaluation tools need to be assessed if the Accreditation Council for Graduate Medical Education requirements for competencies in these areas are to be meaningfully realized.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    URL: Article
    DOI: 10.1542/peds.2009-0658
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2009
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  • 6
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    Parental Understanding of Newborn Screening for Cystic Fibrosis After a Negative Sweat-Test
    American Academy of Pediatrics (AAP) ; 2011
    In:  Pediatrics Vol. 127, No. 2 ( 2011-02-01), p. 276-283
    Details
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 127, No. 2 ( 2011-02-01), p. 276-283
    Abstract: Newborn screening for cystic fibrosis (CF) in Illinois uses an immunoreactive trypsinogen/DNA methodology; most false-positive results identify unaffected carriers. METHODS: Parents whose child received a negative result from the sweat test after a positive newborn screening for CF were surveyed ≥6 weeks later by telephone. All parents received genetic counseling while waiting for the sweat-test results. RESULTS: A total of 90 parents participated. Overall knowledge of CF was high (78%), but the ability to understand the CF screening results was mixed. Although 94% of the parents understood that their child did not have CF, only 79% (62 of 78) of participants whose child had a mutation knew their child was definitely a carrier, and only 1 of 12 parents whose child had no mutation understood that the child may be a carrier. Respondents stated that most relatives were not interested in genetic testing. Both parents had been tested in only 13 couples. Fewer than half (36 of 77 [47%]) of the untested couples expressed interest in genetic testing. Although most participants were satisfied with the process, parents expressed frustration because of the lack of prospective newborn screening discussions by prenatal and pediatric providers and lack of knowledge and sensitivity by those who initially notified them of the abnormal newborn screening results. Speaking to a genetic counselor when scheduling the sweat test decreased anxiety for many parents (53 of 73 [73%] were “very worried” at notification versus 18 of 73 [25%] after scheduling; P & lt; .001). CONCLUSIONS: Parental knowledge about CF is high, but confusion about the child's carrier status and the concept of residual risk persist despite genetic counseling. Relatives express low interest in carrier testing.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    URL: Article
    DOI: 10.1542/peds.2010-2284
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2011
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  • 7
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    Ethical Issues in Newborn Sequencing Research: The Case Study of BabySeq
    American Academy of Pediatrics (AAP) ; 2019
    In:  Pediatrics Vol. 144, No. 6 ( 2019-12-01)
    Details
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 144, No. 6 ( 2019-12-01)
    Abstract: The BabySeq Project is a study funded by the National Institutes of Health and aimed at exploring the medical, behavioral, and economic impacts of integrating genomic sequencing into the care of both healthy newborns and newborns who are sick. Infants were randomly assigned to receive standard of care or standard of care plus sequencing. The protocol and consent specified that only childhood-onset conditions would be returned. When 1 child was found to carry a BRCA2 mutation despite a negative family history, the research team experienced moral distress about nondisclosure and sought institutional review board permission to disclose. The protocol was then modified to require participants to agree to receive results for adult-onset-only conditions as a precondition to study enrollment. The BabySeq team asserted that their new protocol was in the child’s best interest because having one’s parents alive and well provides both an individual child benefit and a “family benefit.” We begin with a short description of BabySeq and the controversy regarding predictive genetic testing of children for adult-onset conditions. We then examine the ethical problems with (1) the revised BabySeq protocol and (2) the concept of family benefit as a justification for the return of adult-onset-only conditions. We reject family benefit as a moral reason to expand genomic sequencing of children beyond conditions that present in childhood. We also argue that researchers should design their pediatric studies to avoid, when possible, identifying adult-onset-only genetic variants and that parents should not be offered the return of this information if discovered unless relevant for the child’s current or imminent health.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    URL: Article
    DOI: 10.1542/peds.2019-1031
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2019
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  • 8
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    Reflections on Charlie Gard and the Best Interests Standard From Both Sides of the Atlantic Ocean
    American Academy of Pediatrics (AAP) ; 2020
    In:  Pediatrics Vol. 146, No. Supplement_1 ( 2020-08-01), p. S60-S65
    Details
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 146, No. Supplement_1 ( 2020-08-01), p. S60-S65
    Abstract: Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie’s parents raised £1.3 million (∼$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie’s best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    URL: Article
    DOI: 10.1542/peds.2020-0818L
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2020
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  • 9
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    The Need to Promote All Pediatric Stem Cell Donors’ Understanding and Interests
    American Academy of Pediatrics (AAP) ; 2014
    In:  Pediatrics Vol. 133, No. 5 ( 2014-05-01), p. e1356-e1357
    Details
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 133, No. 5 ( 2014-05-01), p. e1356-e1357
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    URL: Article
    DOI: 10.1542/peds.2014-0375
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2014
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  • 10
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    Spinal Muscular Atrophy: Past, Present, and Future
    American Academy of Pediatrics (AAP) ; 2019
    In:  NeoReviews Vol. 20, No. 8 ( 2019-08-01), p. e437-e451
    Details
    In: NeoReviews, American Academy of Pediatrics (AAP), Vol. 20, No. 8 ( 2019-08-01), p. e437-e451
    Abstract: Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease caused by deletions or mutations in the survival motor neuron (SMN1) gene. SMA is characterized by loss of lower motor neurons (anterior horn cells) in the spinal cord and brainstem nuclei, leading to progressive symmetrical muscle weakness and atrophy. It affects approximately 1 in 6,000 to 1 in 10,000 individuals and is the most common inherited cause of childhood mortality, but this may soon change given recent developments. In December 2016, nusinersen, an antisense oligonucleotide drug, was approved by the United States Food and Drug Administration for the treatment of SMA, and in July 2018, SMA was added to the recommended uniform screening panel, a list of conditions that all states are encouraged to include in their newborn screening (NBS) panels. In this review, we begin with a brief clinical history of the diagnosis of SMA, discuss the current SMA clinical classification system, describe the current treatment, and discuss evolving treatment guidelines. We then discuss the path to include SMA in NBS programs as well as the controversies it engenders because the variability in age at symptom onset means early identification of asymptomatic patients who will not require therapy for years or decades. We also consider alternate population screening opportunities. Next, we consider experimental treatments. We conclude by supporting NBS for SMA with the caveat that a long-term follow-up registry is ethically essential to ensure that the benefits outweigh the harms for all screened infants, including those with milder and/or later-onset forms of SMA.
    Type of Medium: Online Resource
    ISSN: 1526-9906
    URL: Article
    DOI: 10.1542/neo.20-8-e437
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2019
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