Benjamin S Wilfond

Benjamin S Wilfond

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Benjamin S Wilfond

Publications by authors named "Benjamin S Wilfond"

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Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some.

Ethics Hum Res 2019 Sep;41(5):2-15

Endowed chair of pediatric clinical and translational research at the University of Louisville School of Medicine and a faculty affiliate at the Institute for Bioethics, Health Policy, and Law at the University of Louisville.

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http://dx.doi.org/10.1002/eahr.500029DOI Listing
September 2019

Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.

Am J Kidney Dis 2019 Jun 14;73(6):837-845. Epub 2019 Mar 14.

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA.

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https://linkinghub.elsevier.com/retrieve/pii/S02726386193012
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http://dx.doi.org/10.1053/j.ajkd.2019.01.020DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6548468PMC
June 2019

Understanding as an Ethical Aspiration in an Era of Digital Technology-Based Communication: An Analysis of Informed Consent Functions.

Am J Bioeth 2019 05;19(5):34-36

a University of Washington School of Medicine and Seattle Children's Hospital and Research Institute.

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https://www.tandfonline.com/doi/full/10.1080/15265161.2019.1
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http://dx.doi.org/10.1080/15265161.2019.1587035DOI Listing
May 2019

The evolving landscape of expanded carrier screening: challenges and opportunities.

Genet Med 2019 04 24;21(4):790-797. Epub 2018 Sep 24.

Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USA.

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http://dx.doi.org/10.1038/s41436-018-0273-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6752283PMC
April 2019

Should Research Participants Be Notified About Results of Currently Unknown but Potential Significance?

Am J Bioeth 2019 Apr;19(4):73-74

b University of Washington School of Medicine.

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http://dx.doi.org/10.1080/15265161.2019.1572831DOI Listing
April 2019

Justifying Investigator/Clinician Consent When The Physician-Patient Relationship Can Support Better Research Decision-Making.

Am J Bioeth 2019 Apr;19(4):26-28

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute and.

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http://dx.doi.org/10.1080/15265161.2019.1574496DOI Listing
April 2019

Gaps in the Implementation of Shared Decision-making: Illustrative Cases.

Pediatrics 2019 03 5;143(3). Epub 2019 Feb 5.

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle Children's Hospital, Seattle, Washington.

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http://dx.doi.org/10.1542/peds.2018-3055DOI Listing
March 2019

Ethical Considerations for Unblinding a Participant's Assignment to Interpret a Resolved Adverse Event.

Am J Bioeth 2018 Oct;18(10):66-67

b Johns Hopkins Bloomberg School of Public Health and Johns Hopkins Berman Institute of Bioethics.

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http://dx.doi.org/10.1080/15265161.2018.1522167DOI Listing
October 2018

A Randomized Trial of Rapamycin to Increase Longevity and Healthspan in Companion Animals: Navigating the Boundary Between Protections for Animal Research and Human Subjects Research.

Am J Bioeth 2018 Oct;18(10):58-59

c Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, and University of Washington School of Medicine.

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http://dx.doi.org/10.1080/15265161.2018.1522166DOI Listing
October 2018

Metaphors matter: from biobank to a library of medical information.

Genet Med 2018 08 21;20(8):802-805. Epub 2017 Dec 21.

Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, California, USA.

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http://dx.doi.org/10.1038/gim.2017.204DOI Listing
August 2018

Research Consent at the Age of Majority: Preferable but not Obligatory.

Pediatrics 2018 08 6;142(2). Epub 2018 Jul 6.

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington; and.

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http://dx.doi.org/10.1542/peds.2017-3038DOI Listing
August 2018

Responding to parental requests for life-sustaining treatment - relational potential revisited.

Acta Paediatr 2018 06 26;107(6):923-926. Epub 2017 Dec 26.

Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.

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http://dx.doi.org/10.1111/apa.14179DOI Listing
June 2018

Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.

J Law Med Ethics 2018 03 27;46(1):87-109. Epub 2018 Mar 27.

Susan M. Wolf, J.D., is McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; and Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences, University of Minnesota. She was one of three Principal Investigators on NIH/NCI/NHGRI grant 1R01CA154517 on return of genomic results to family members, including after the death of the proband. Emily Scholtes, J.D., is a graduate of the University of Minnesota Law School, where she served as a Research Assistant on the project on return of genomic results to family members. She then clerked for the U.S. Court of Appeals for the Eighth Circuit before going into private practice. The views expressed in this article are exclusively those of the authors. This article has been prepared for informational purposes only and does not constitute legal advice. Barbara A. Koenig, Ph.D., is Director of Bioethics and Professor of Bioethics and Medical Anthropology based at the Institute for Health & Aging, University of California, San Francisco. She was one of three Principal Investigators on NIH/NCI/NHGRI grant 1R01CA154517 on return of genomic results to family members, including after the death of the proband. Gloria M. Petersen, Ph.D., is Professor of Epidemiology, Department of Health Sciences Research, Mayo Clinic College of Medicine. She is a Founding Fellow of the American College of Medical Genetics and Genomics. She was one of three Principal Investigators on NIH/NCI/NHGRI grant 1R01CA154517 on return of genomic results to family members, including after the death of the proband. Susan A. Berry, M.D., is Professor of Pediatrics & Genetics and Division Director for Genetics and Metabolism in the Department of Pediatrics, University of Minnesota. She is a Fellow of the American Academy of Pediatrics and the American College of Medical Genetics. Laura M. Beskow, M.P.H., Ph.D., is Professor of Health Policy and Director of Research Ethics, Center for Biomedical Ethics & Society, Vanderbilt University. She received her M.P.H. with a concentration in health law from Boston University and her Ph.D. in Health Policy and Administration, with a minor in Epidemiology, at the University of North Carolina at Chapel Hill. Mary B. Daly, M.D., Ph.D., is a medical oncologist and epidemiologist who chairs the Department of Clinical Genetics at Fox Chase Cancer Center. Her research focuses on defining the best methods of communicating hereditary cancer risk information and on providing risk management strategies and coping skills to family members dealing with an increased risk for cancer. Conrad V. Fernandez, B.Sc., M.D., is Professor and Head of the Division of Pediatric Hematology/Oncology in the Department of Pediatrics, IWK Health Centre, Dalhousie University and is cross-appointed in Bioethics, Medicine, and Postgraduate Studies. He obtained his medical degree at McMaster University, specialist certification in Pediatrics as a Fellow of the Royal College of Physicians and Surgeons of Canada at Dalhousie University, and completed specialty training in Pediatric Hematology/Oncology at the University of British Columbia. Robert C. Green, M.D., M.P.H., is a medical geneticist and physician-scientist who directs the G2P Research Program in translational genomics and health outcomes in the Division of Genetics, Brigham and Women's Hospital and Harvard Medical School. He is also Associate Director for Research at Partners Personalized Medicine. Dr. Green leads and co-leads the MedSeq Project and the BabySeq Project respectively, two NIH-funded randomized trials designed to explore the medical, behavioral, and economic implications of integrating genome sequencing into the medical care of adults and newborns. Bonnie S. LeRoy, M.S., C.G.C., is Professor and Director of the Graduate Program in Genetic Counseling, University of Minnesota. Her work focuses on preparing graduate students to enter the profession of genetic counseling. Her research examines the ethical and social challenges associated with the genetic counseling profession. She served as the President of the American Board of Genetic Counseling from 2001-03. Noralane M. Lindor, M.D., is Professor of Medical Genetics in the Department of Health Sciences Research at Mayo Clinic in Scottsdale, Arizona. She received her medical degree from Mayo Medical School, and did her residencies at Bowman Gray School of Medicine in Winston-Salem, North Carolina, and at Mayo Clinic in Rochester. P. Pearl O'Rourke, M.D., is Director of Human Research Affairs at Partners HealthCare in Boston, and Associate Professor of Pediatrics at Harvard Medical School. She completed medical school at Dartmouth Medical School and the University of Minnesota Medical School. Carmen Radecki Breitkopf, Ph.D., is Professor of Health Services Research in the Department of Health Sciences Research at Mayo Clinic College of Medicine and Science in Rochester, Minnesota. She earned her Master's and Doctoral degrees in Psychology from the State University of New York at Albany. Mark A. Rothstein, J.D., is Herbert F. Boehl Chair of Law & Medicine and Director of the Institute for Bioethics, Health Policy & Law at the University of Louisville School of Medicine. He is past-President of the American Society of Law, Medicine & Ethics and serves as Public Health Ethics editor for the American Journal of Public Health. Brian Van Ness, Ph.D., is Professor of Genetics, Cell Biology and Development at the University of Minnesota. He earned his doctorate in Biochemistry from the University of Minnesota, completed a postdoctoral fellowship at Fox Chase Cancer Center, and has served as the Department Head and Director of the Institute of Human Genetics at the University of Minnesota. Benjamin S. Wilfond, M.D., is Director of the Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital; Professor and Chief of the Division of Bioethics; Professor, Pulmonary and Sleep Medicine, Department of Pediatrics; and Adjunct Professor, Department of Bioethics and Humanities, University of Washington School of Medicine. He is past-President of the Association of Bioethics Program Directors, Chair for the Clinical Research Ethics Consultation Working Group for the Clinical and Translational Science Awards program, and a member of the Bioethics and Legal Working Group of the Newborn Screening Translational Research Network.

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http://dx.doi.org/10.1177/1073110518766024DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040667PMC
March 2018

Patient perspectives on the use of categories of conditions for decision making about genomic carrier screening results.

Am J Med Genet A 2018 02 18;176(2):376-385. Epub 2017 Dec 18.

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, Washington.

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http://dx.doi.org/10.1002/ajmg.a.38583DOI Listing
February 2018

Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation.

Hosp Pediatr 2018 01 11. Epub 2018 Jan 11.

Division of Neonatology, Department of Pediatrics, and Berman Institute of Bioethics, School of Medicine, Johns Hopkins University, Baltimore, Maryland

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http://hosppeds.aappublications.org/lookup/doi/10.1542/hpeds
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http://dx.doi.org/10.1542/hpeds.2016-0168DOI Listing
January 2018

Attending to the Interrelatedness of the Functions of Consent.

Am J Bioeth 2017 12;17(12):12-13

a Seattle Children's Hospital and Research Institute and University of Washington School of Medicine.

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http://dx.doi.org/10.1080/15265161.2017.1388881DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6095135PMC
December 2017

A Trial to Test a Novel Approach to Diabetes Prevention.

Am J Bioeth 2017 Oct;17(10):74-75

c Treuman Katz Center for Pediatric Bioethics , Seattle Children's Hospital and Research Institute , and University of Washington School of Medicine.

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http://dx.doi.org/10.1080/15265161.2017.1366200DOI Listing
October 2017

Expanded Access for Nusinersen in Patients With Spinal Muscular Atropy: Negotiating Limited Data, Limited Alternative Treatments, and Limited Hospital Resources.

Am J Bioeth 2017 Oct;17(10):66-67

b Johns Hopkins Bloomberg School of Public Health and Johns Hopkins Berman Institute of Bioethics.

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http://dx.doi.org/10.1080/15265161.2017.1366199DOI Listing
October 2017

Genotype-Driven Recruitment in Population-Based Biomedical Research.

Am J Bioeth 2017 Apr;17(4):58-59

b Treuman Katz Center for Pediatric Bioethics and Seattle Children's Research Institute.

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http://dx.doi.org/10.1080/15265161.2017.1284935DOI Listing
April 2017

Should Patients Be Required to Undergo Standard Chemotherapy Before Being Eligible for Novel Phase I Immunotherapy Clinical Trials?

Am J Bioeth 2017 Apr;17(4):66-67

b Johns Hopkins Bloomberg School of Public Health and Johns Hopkins Berman Institute of Bioethics.

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http://dx.doi.org/10.1080/15265161.2017.1284934DOI Listing
April 2017

HIV Remission in Neonates: Ethical and Human Rights Considerations.

Perspect Biol Med 2016 ;58(3):341-3

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http://dx.doi.org/10.1353/pbm.2016.0011DOI Listing
March 2017

The Role of Community Engagement in Novel HIV Research in Infants.

Perspect Biol Med 2016 ;58(3):344-7

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http://dx.doi.org/10.1353/pbm.2016.0013DOI Listing
March 2017

Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

J Law Med Ethics 2015 ;43(3):440-63

Director of the Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital; Professor and Chief of the Division of Bioethics; Professor, Pulmonary and Sleep Medicine, Department of Pediatrics; and Adjunct Professor, Department of Bioethics and Humanities, University of Washington School of Medicine. He is President of the Association of Bioethics Program Directors, Chair for the Clinical Research Ethics Consultation Working Group for the Clinical and Translational Science Awards program, and a member of the Bioethics and Legal Working Group of the Newborn Screening Translational Research Network.

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http://dx.doi.org/10.1111/jlme.12288DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4617203PMC
January 2017

Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the "Benefit to Families".

J Law Med Ethics 2015 ;43(3):552-8

Directs the Genomes-2People Research Program and Translational Genomics and Health Outcomes within the Division of Genetics, Department of Medicine, Brigham and Women's Hospital, with appointments at the Broad Institute and Harvard Medical School. He is also Associate Director for Research, Partners HealthCare Personalized Medicine.

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http://dx.doi.org/10.1111/jlme.12298DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4617182PMC
January 2017

Breaking the Sounds of Silence: Respecting People With Disabilities and Reproductive Decision Making.

Am J Bioeth 2017 01;17(1):37-39

a University of Washington School of Medicine and Seattle Children's Hospital.

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http://dx.doi.org/10.1080/15265161.2016.1251664DOI Listing
January 2017

When a Clinical Trial Is the Only Option.

Am J Bioeth 2016 10;16(10):67-8

b Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute.

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http://dx.doi.org/10.1080/15265161.2016.1214329DOI Listing
October 2016

Studying the Role of Financial Incentives to Promote Hepatitis B Vaccination in a Community Clinic.

Am J Bioeth 2016 10;16(10):75-6

b Johns Hopkins Berman Institute of Bioethics, Johns Hopkins Bloomberg School of Public Health.

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http://dx.doi.org/10.1080/15265161.2016.1214330DOI Listing
October 2016

Ethical challenges in research with orphans and vulnerable children: a qualitative study of researcher experiences.

Int Health 2016 05;8(3):187-96

Department of Pediatrics, University of Washington School of Medicine Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute.

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http://dx.doi.org/10.1093/inthealth/ihw020DOI Listing
May 2016

Adolescent Research Participants' Descriptions of Medical Research.

AJOB Empir Bioeth 2016 Jan 19;7(1):1-7. Epub 2015 Feb 19.

Department of Bioethics, NIH Clinical Center.

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http://dx.doi.org/10.1080/23294515.2015.1017059DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4797334PMC
January 2016

Research on Medical Practices and the Patient-Physician Relationship: What Can Regulators Learn from Patients?

AMA J Ethics 2015 Dec 1;17(12):1160-5. Epub 2015 Dec 1.

Director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Research Institute and a professor in and the chief of the Division of Bioethics within the Department of Pediatrics at the University of Washington School of Medicine in Seattle, and the chief of the Bioethics Consultation Service and an attending physician in the Division of Pulmonary Medicine at Seattle Children's Hospital.

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http://journalofethics.ama-assn.org/2015/12/pfor2-1512.html
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http://dx.doi.org/10.1001/journalofethics.2015.17.12.pfor2-1512DOI Listing
December 2015

Informed Consent for Research on Medical Practices.

Ann Intern Med 2015 Nov;163(9):725-6

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http://dx.doi.org/10.7326/L15-5152-2DOI Listing
November 2015

Challenging cases in research ethics.

Am J Bioeth 2014 ;14(10):49

a Johns Hopkins Berman Institute of Bioethics and Johns Hopkins Bloomberg School of Public Health.

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http://dx.doi.org/10.1080/15265161.2014.947804DOI Listing
October 2015

The obligations to report statutory sexual abuse disclosed in a research study.

Am J Bioeth 2014 ;14(10):50

a Johns Hopkins Berman Institute of Bioethics and Johns Hopkins Bloomberg School of Public Health.

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http://dx.doi.org/10.1080/15265161.2014.947806DOI Listing
October 2015

Ethical implications of social media in health care research.

Am J Bioeth 2014 ;14(10):58-9

a Johns Hopkins Berman Institute of Bioethics and Johns Hopkins Bloomberg School of Public Health.

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http://dx.doi.org/10.1080/15265161.2014.947820DOI Listing
October 2015

Navigating parental permission for neonatal research.

Am J Bioeth 2015 ;15(4):76

a Johns Hopkins Berman Institute of and Johns Hopkins Bloomberg School of Public Health.

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http://dx.doi.org/10.1080/15265161.2015.1011003DOI Listing
October 2015

Protecting research subject welfare in preventive trials for autosomal dominant Alzheimer's disease.

Am J Bioeth 2015 ;15(4):83-4

a Johns Hopkins Berman Institute of Bioethics and Johns Hopkins Bloomberg School of Public Health.

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http://dx.doi.org/10.1080/15265161.2015.1011009DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779603PMC
October 2015

The potential harms and benefits from research on medical practices.

Hastings Cent Rep 2015 May-Jun;45(3):5-6

Seattle Children's Hospital.

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http://dx.doi.org/10.1002/hast.440DOI Listing
August 2015

It's complicated: criteria for policy decisions for the clinical integration of genome-scale sequencing for reproductive decision making.

Mol Genet Genomic Med 2015 Jul;3(4):239-42

Center for Health Research, Kaiser Permanente Northwest Portland, Oregon.

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http://dx.doi.org/10.1002/mgg3.130DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4521960PMC
July 2015

Decisions regarding resuscitation of extremely premature infants: should social context matter?

JAMA Pediatr 2015 Jun;169(6):521-2

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Division of Bioethics, Department of Pediatrics, University of Washington School of Medicine, Seattle.

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http://archpedi.jamanetwork.com/article.aspx?doi=10.1001/jam
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http://dx.doi.org/10.1001/jamapediatrics.2014.3813DOI Listing
June 2015

Challenging cases in research ethics.

Am J Bioeth 2015 Apr;15(4):75

a Johns Hopkins Berman Institute of Bioethics and Johns Hopkins Bloomberg School of Public Health.

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http://dx.doi.org/10.1080/15265161.2015.1011002DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4397567PMC
April 2015

Research on medical practices and the ethics of disclosure.

Pediatrics 2015 Feb 12;135(2):208-10. Epub 2015 Jan 12.

Treuman Katz Center for Pediatric Bioethics and Department of Pediatrics, Seattle Children's Research Institute and University of Washington, Seattle, Washington

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http://dx.doi.org/10.1542/peds.2014-3578DOI Listing
February 2015

The ethics of disclosing to research subjects the availability of off-label marketed drugs.

Am J Bioeth 2014 ;14(4):51

a Johns Hopkins Berman Institute of Bioethics and Johns Hopkins Bloomberg School of Public Health.

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http://dx.doi.org/10.1080/15265161.2014.889943DOI Listing
October 2014

Ethics of continuing to provide a drug on an open-label extension study for an "unapproved indication".

Am J Bioeth 2014 ;14(4):56

a Johns Hopkins Berman Institute of Bioethics and Johns Hopkins Bloomberg School of Public Health.

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http://dx.doi.org/10.1080/15265161.2014.889956DOI Listing
October 2014

Phenylketonuria Scientific Review Conference: state of the science and future research needs.

Mol Genet Metab 2014 Jun 6;112(2):87-122. Epub 2014 Mar 6.

The Young Face, Facial Plastic and Reconstructive Surgery, Cumming, GA 30041, USA. Electronic address:

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https://www.team-share.net/Phenylketonuria_Scientific_Review
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http://linkinghub.elsevier.com/retrieve/pii/S109671921400085
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http://dx.doi.org/10.1016/j.ymgme.2014.02.013DOI Listing
June 2014

Accepting brain death.

N Engl J Med 2014 Mar 5;370(10):891-4. Epub 2014 Feb 5.

From the Center for Biomedical Ethics, Stanford University, Palo Alto, CA (D.C.M.); the Treuman Katz Center for Pediatric Ethics, Seattle Children's Hospital, Seattle (B.S.W.); and the Division of Medical Ethics, New York University, New York (A.L.C.).

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http://dx.doi.org/10.1056/NEJMp1400930DOI Listing
March 2014

Our children are not a diagnosis: the experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18.

Am J Med Genet A 2014 Feb 5;164A(2):308-18. Epub 2013 Dec 5.

Kaiser Permanente, Panorama City, California.

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http://dx.doi.org/10.1002/ajmg.a.36298DOI Listing
February 2014

Tracheostomies and assisted ventilation in children with profound disabilities: navigating family and professional values.

Pediatrics 2014 Feb;133 Suppl 1:S44-9

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, and Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington.

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http://pediatrics.aappublications.org/cgi/doi/10.1542/peds.2
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http://dx.doi.org/10.1542/peds.2013-3608HDOI Listing
February 2014