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Wyświetlanie 1-16 z 16
Tytuł:
To Disclose or Not to Disclose: Secondary Findings of XXY Chromosomes.
Autorzy:
Wilfond BS; University of Washington School of Medicine.
Duenas DM; Seattle Children's Research Institute.
Johnson LM; St. Jude Children's Research Hospital.
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Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2022 Oct; Vol. 22 (10), pp. 87-88.
Typ publikacji:
Journal Article
MeSH Terms:
Disclosure*
Forensic Genetics*/ethics
Sex Chromosomes*/genetics
Humans
Czasopismo naukowe
Tytuł:
Engaging Patient Advisory Committees to Inform a Genomic Cancer Risk Study: Lessons for Future Efforts.
Autorzy:
Lindberg NM; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USA.
Mittendorf KF; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USA.
Duenas DM; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA, USA.
Anderson K; Denver Health and Hospital Authority, Denver, CO, USA.
Koomas A; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USA.
Kraft SA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA, USA.; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
Okuyama S; Denver Health and Hospital Authority, Denver, CO, USA.
Shipman KJ; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA, USA.; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
Vandermeer ML; Kaiser Permanente Center for Health Research, Portland, OR, USA.
Goddard KA; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USA.
Wilfond BS; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA, USA.; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
McMullen C; Kaiser Permanente Center for Health Research, Portland, OR, USA.
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Źródło:
The Permanente journal [Perm J] 2022 Jun 29; Vol. 26 (2), pp. 28-39. Date of Electronic Publication: 2022 Jun 17.
Typ publikacji:
Journal Article
MeSH Terms:
Advisory Committees*
Neoplasms*/genetics
Genomics ; Humans ; Patient Participation ; Stakeholder Participation
Czasopismo naukowe
Tytuł:
Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews.
Autorzy:
Mittendorf KF; Vanderbilt-Ingram Cancer Center, Vanderbilt University Medical Center, 2525 West End Avenue, Nashville, TN, 37203, USA.
Lewis HS; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 9th Ave, Seattle, WA, 98101, USA.
Duenas DM; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 9th Ave, Seattle, WA, 98101, USA.
Eubanks DJ; Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave, Portland, OR, 97227, USA.
Gilmore MJ; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave, Portland, OR, 97227, USA.
Goddard KAB; Division of Cancer Control and Population Sciences, National Cancer Institute, 9609 Medical Center Drive, Bethesda, MD, 20892, USA.
Joseph G; Department of Humanities and Social Sciences, University of California San Francisco, 490 Illinois Street, 7th Floor, San Francisco, CA, 94143, USA.
Kauffman TL; Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave, Portland, OR, 97227, USA.
Kraft SA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 9th Ave, Seattle, WA, 98101, USA.; Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington, 1959 NE. Pacific St, Seattle, WA, 98195, USA.
Lindberg NM; Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave, Portland, OR, 97227, USA.
Reyes AA; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave, Portland, OR, 97227, USA.
Shuster E; Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave, Portland, OR, 97227, USA.
Syngal S; Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA.; Harvard Medical School, 25 Shattuck St, Boston, MA, 02115, USA.; Brigham and Women's Hospital, 75 Francis St, Boston, MA, 02115, USA.
Ukaegbu C; Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA.; Harvard Medical School, 25 Shattuck St, Boston, MA, 02115, USA.
Zepp JM; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave, Portland, OR, 97227, USA.
Wilfond BS; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 9th Ave, Seattle, WA, 98101, USA.; Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington, 1959 NE. Pacific St, Seattle, WA, 98195, USA.
Porter KM; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 9th Ave, Seattle, WA, 98101, USA. .
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Źródło:
Hereditary cancer in clinical practice [Hered Cancer Clin Pract] 2022 Jun 10; Vol. 20 (1), pp. 22. Date of Electronic Publication: 2022 Jun 10.
Typ publikacji:
Journal Article
Czasopismo naukowe
Tytuł:
Enrolling Adolescents with Rare Disease for Early Phase Clinical Trials While Under the Care of Child Protection Services: Balancing Protection and Access.
Autorzy:
Wilfond BS; University of Washington School of Medicine.; Seattle Children's Research Institute.
Duenas DM; Seattle Children's Research Institute.
Johnson LM; St. Jude Children's Research Hospital.
Pokaż więcej
Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2022 Apr; Vol. 22 (4), pp. 81-82.
Typ publikacji:
Journal Article
MeSH Terms:
Health Services Accessibility*
Rare Diseases*
Adolescent ; Child ; Humans
Czasopismo naukowe
Tytuł:
Supporting Community-Academic Research Partnerships: Reflections from the Ground.
Autorzy:
Wilfond BS; Seattle Children's Research Institute.
Duenas DM; Seattle Children's Research Institute.
Johnson LM; St. Jude Children's Research Hospital.
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Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2021 Oct; Vol. 21 (10), pp. 44-45.
Typ publikacji:
Journal Article
MeSH Terms:
Community-Based Participatory Research*
Community-Institutional Relations*
Cooperative Behavior ; Humans ; Organizations
Czasopismo naukowe
Tytuł:
When Professional Meets Personal: How Should Research Staff Advertise on Social Media for Research Opportunities?
Autorzy:
Johnson LM; St. Jude Children's Research Hospital.
Duenas DM; Seattle Children's Research Institute.
Wilfond BS; Seattle Children's Research Institute.
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Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2021 Oct; Vol. 21 (10), pp. 38-39.
Typ publikacji:
Journal Article; Research Support, N.I.H., Extramural
MeSH Terms:
Social Media*
Health Personnel ; Humans
Czasopismo naukowe
Tytuł:
Patient perspectives on how to demonstrate respect: Implications for clinicians and healthcare organizations.
Autorzy:
Bridges C; University of Washington School of Medicine, Seattle, Washington, United States of America.
Duenas DM; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, United States of America.
Lewis H; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, United States of America.
Anderson K; Denver Health Ambulatory Care Services, Denver, Colorado, United States of America.
Opel DJ; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, United States of America.; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, United States of America.
Wilfond BS; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, United States of America.; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, United States of America.
Kraft SA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, United States of America.; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, United States of America.
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Źródło:
PloS one [PLoS One] 2021 Apr 29; Vol. 16 (4), pp. e0250999. Date of Electronic Publication: 2021 Apr 29 (Print Publication: 2021).
Typ publikacji:
Journal Article; Research Support, N.I.H., Extramural
MeSH Terms:
Hispanic or Latino/*statistics & numerical data
Patient Satisfaction/*statistics & numerical data
Physician-Patient Relations/*ethics
White People/*statistics & numerical data
Adult ; Colorado/ethnology ; Delivery of Health Care, Integrated ; Female ; Hispanic or Latino/psychology ; Humans ; Interviews as Topic ; Male ; Middle Aged ; Oregon/ethnology ; Patient Satisfaction/ethnology ; Primary Health Care ; Qualitative Research ; White People/psychology ; Young Adult
Czasopismo naukowe
Tytuł:
Conjoined Consent: Informed Consent When Donor and Recipient Are Both Research Participants.
Autorzy:
Johnson LM; St. Jude Children's Research Hospital.
Duenas DM; Seattle Children's Research Institute.
Wilfond BS; Seattle Children's Research Institute.
Pokaż więcej
Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2021 Apr; Vol. 21 (4), pp. 106-107.
Typ publikacji:
Journal Article; Research Support, N.I.H., Extramural
MeSH Terms:
Informed Consent*
Tissue Donors*
Humans
Czasopismo naukowe
Tytuł:
Supporting Investigators in Challenging Cases: Unease in the Face of an Ethically Appropriate Action.
Autorzy:
Wilfond BS; Seattle Childrens Research Institute.
Duenas DM; Seattle Childrens Research Institute.
Johnson LM; St. Jude Children's Research Hospital.
Pokaż więcej
Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2021 Apr; Vol. 21 (4), pp. 98-99.
Typ publikacji:
Journal Article; Research Support, N.I.H., Extramural
MeSH Terms:
Research Personnel*
Humans
Czasopismo naukowe
Tytuł:
Reexamining the categorical exclusion of pediatric participants from controlled human infection trials.
Autorzy:
Murphy SC; Departments of Laboratory Medicine and Microbiology and the Center for Emerging and Re-emerging Infectious Diseases, University of Washington, 750 Republican St., F873, Seattle, WA, 98109, United States of America.; Seattle Malaria Clinical Trials Center, Fred Hutch Cancer Research Center, 1100 Fairview Ave. N., E3-300, Seattle, WA, 98109, United States of America.
Duenas DM; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, 1900 Ninth Ave., M/S JMB-6, Seattle, WA, 98101, United States of America.
Richie TL; Sanaria Inc., 9800 Medical Center Drive, Suite A209, Rockville, MD, 20850, United States of America.
Shah SK; Department of Pediatrics, Northwestern University Feinberg School of Medicine, 680 N Lake Shore Drive, Suite 13-111, Chicago, IL, 60611, United States of America.
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Źródło:
Bioethics [Bioethics] 2020 Oct; Vol. 34 (8), pp. 785-796. Date of Electronic Publication: 2020 Jul 26.
Typ publikacji:
Journal Article; Research Support, Non-U.S. Gov't
MeSH Terms:
Biomedical Research*
Ethics, Research*
Child ; Humans ; Informed Consent ; Research Design ; Research Personnel ; Vulnerable Populations
Czasopismo naukowe
Tytuł:
Click Here to Complete This Survey: Online Research, Adolescents, and Parental Consent.
Autorzy:
Johnson LM; St. Jude Children's Research Hospital.
Duenas DM; Seattle Children's Research Institute.
Wilfond BS; Seattle Children's Research Institute.; University of Washington.
Pokaż więcej
Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2020 Oct; Vol. 20 (10), pp. 82-83.
Typ publikacji:
Journal Article; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't
MeSH Terms:
Parental Consent*
Parents*
Adolescent ; Humans ; Surveys and Questionnaires
Czasopismo naukowe
Tytuł:
Conflicts of Interest and Recommendations for Clinical Treatments That Benefit Researchers.
Autorzy:
Wilfond BS; University of Washington School of Medicine.; Seattle Children's Research Institute.
Duenas DM; Seattle Children's Research Institute.
Johnson LM; St. Jude Children's Research Hospital.
Pokaż więcej
Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2020 Oct; Vol. 20 (10), pp. 90-91.
Typ publikacji:
Journal Article; Research Support, Non-U.S. Gov't
MeSH Terms:
Conflict of Interest*
Research Personnel*
Disclosure ; Humans
Czasopismo naukowe
Tytuł:
Bridging the Researcher-Participant Gap: A Research Agenda to Build Effective Research Relationships.
Autorzy:
Kraft SA; Seattle Children's Hospital and Research Institute.; University of Washington School of Medicine.
Duenas DM; Seattle Children's Hospital and Research Institute.
Lewis H; Seattle Children's Hospital and Research Institute.
Shah SK; Ann and Robert H. Lurie Children's Hospital of Chicago.; Northwestern University Feinberg School of Medicine.
Pokaż więcej
Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2020 Jun; Vol. 20 (5), pp. 31-33.
Typ publikacji:
Journal Article; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't; Comment
MeSH Terms:
Informed Consent*
Research Personnel*
Humans
Czasopismo naukowe
Tytuł:
Clearing Muddy Waters: The Need to Reconceptualize Minor Increase over Minimal Risk in Pediatric Rare Disease Research.
Autorzy:
Duenas DM; Seattle Children's Research Institute.
Wilfond BS; Seattle Children's Research Institute.; University of Washington School of Medicine.
Johnson LM; St. Jude Children's Research Hospital.
Pokaż więcej
Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2020 May; Vol. 20 (4), pp. 8-10.
Typ publikacji:
Editorial; Research Support, Non-U.S. Gov't
MeSH Terms:
Rare Diseases*
Biomedical Research/*ethics
Biomedical Research/*legislation & jurisprudence
Research Design/*legislation & jurisprudence
Adolescent ; Child ; Human Experimentation/ethics ; Human Experimentation/legislation & jurisprudence ; Humans ; Risk
Raport
Tytuł:
Greater Than Minimal Risk, No Direct Benefit - Bridging Drug Trials and Novel Therapy in Pediatric Populations.
Autorzy:
Wilfond BS; Seattle Children's Research Institute.; University of Washington School of Medicine.
Duenas DM; Seattle Children's Research Institute.
Johnson LM; St. Jude Children's Research Hospital.
Pokaż więcej
Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2020 May; Vol. 20 (4), pp. 102-103.
Typ publikacji:
Case Reports; Journal Article; Research Support, N.I.H., Extramural
MeSH Terms:
Clinical Trials as Topic*
Ethics Committees, Research*
Research Design*
Anemia, Sickle Cell/*prevention & control
Heterocyclic Compounds/*therapeutic use
Benzylamines ; Child ; Cyclams ; Humans ; Minors ; Risk Assessment
Czasopismo naukowe
Tytuł:
Ethical Drug Development for Rare Childhood Diseases: When There Are Limited But Promising Data in Adults, How to Choose Between Safety or Efficacy Studies?
Autorzy:
Johnson LM; St. Jude Children's Research Hospital.
Duenas DM; Seattle Children's Research Institute.
Wilfond BS; Seattle Children's Research Institute.; University of Washington School of Medicine.
Pokaż więcej
Źródło:
The American journal of bioethics : AJOB [Am J Bioeth] 2020 May; Vol. 20 (4), pp. 111-113.
Typ publikacji:
Case Reports; Journal Article
MeSH Terms:
Clinical Trial Protocols as Topic*
Ethics, Research*
Investigational New Drug Application*
Research Design*
Clinical Trials as Topic/*ethics
Drug Development/*ethics
Adolescent ; Humans ; Lupus Erythematosus, Systemic/prevention & control ; Minors ; Rare Diseases/prevention & control ; Risk ; United States ; United States Food and Drug Administration
Czasopismo naukowe
    Wyświetlanie 1-16 z 16

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