Review

Understanding Ethical Dilemmas in Pediatric Lipidology- Genetic Testing in Youth

Kenneth R Feingold¹, S. Faisal Ahmed², Bradley Anawalt³, Marc R Blackman⁴, Alison Boyce⁵, George Chrousos⁶, Emiliano Corpas⁷, Wouter W de Herder⁸, Ketan Dhatariya⁹, Kathleen Dungan¹⁰, Johannes Hofland¹¹, Sanjay Kalra¹², Gregory Kaltsas¹³, Nitin Kapoor¹⁴, Christian Koch¹⁵, Peter Kopp¹⁶, Márta Korbonits¹⁷, Christopher S Kovacs¹⁸, Wendy Kuohung¹⁹, Blandine Laferrère²⁰, Miles Levy²¹, Elizabeth A McGee²², Robert McLachlan²³, Radhika Muzumdar²⁴, Jonathan Purnell²⁵, Rodolfo Rey²⁶, Rakesh Sahay²⁷, Amy S Shah²⁸, Frederick Singer²⁹, Mark A Sperling³⁰, Constantine A Stratakis³¹, Dace L Trence³², Don P Wilson³³

, editors.

In: Endotext [Internet]. South Dartmouth (MA): MDText.com, Inc.; 2000.

2024 Mar 5.

Affiliations

¹ Director, Pellegrino Center for Clinical Bioethics Professor, Georgetown University Medical Center, Washington, DC.
² Diplomate, American Board of Clinical Lipidology, Endowed Chair, Pediatric Cardiovascular Health and Risk Prevention, Pediatric Endocrinology and Diabetes. Cook Children’s Medical Center, Fort Worth, Texas

Book Affiliations

¹ Professor of Medicine Emeritus, University of California, San Francisco, CA
² Developmental Endocrinology Research Group, University of Glasgow, Glasgow, UK
³ Chief of Medicine at the University of Washington Medical Center and Professor and Vice Chair of the Department of Medicine, University of Washington
⁴ Sr. Physician Scientist, Washington DC VA Medical Center; Professor of Medicine & Rehabilitation Medicine, Georgetown University; Clinical Professor of Medicine, Biochemistry and Molecular Medicine, George Washington University; and Professor of Medicine (Part-time), Johns Hopkins University
⁵ Pediatric Endocrinologist and Associate Research Physician in the Skeletal Diseases and Mineral Homeostasis Section, National Institute of Dental and Craniofacial Research, National Institutes of Health
⁶ Professor of Pediatrics and Endocrinology, Division of Endocrinology, Metabolism and Diabetes, First Department of Pediatrics, National and Kapodistrian University of Athens Medical School, "Aghia Sophia" Children's Hospital, Athens, Greece
⁷ M.D. Ph.D in Gerontology. Honorary Professor of Medicine, Universidad de Alcalá, Madrid. Consultant in Endocrinology, Hospital HLA Guadalajara (Spain).
⁸ Professor of Endocrine Oncology, Erasmus MC and Erasmus MC Cancer Center, Rotterdam, the Netherlands
⁹ Consultant in Diabetes, Endocrinology and General Medicine, Norfolk and Norwich University Hospitals NHS Foundation Trust and University of East Anglia, Norwich, UK.
¹⁰ Professor of Medicine, Division of Endocrinology, Diabetes, and Metabolism, Ohio State University
¹¹ Consultant Endocrinologist, Erasmus MC and Erasmus MC Cancer Center, Rotterdam, the Netherlands
¹² Consultant Endocrinologist, Department of Endocrinology, Bharti Hospital, Karnal, India
¹³ Professor of General Medicine-Endocrinology, 1st Department of Propaedeutic Medicine, National and Kapodistrian University of Athens, Athens, Greece
¹⁴ Professor of Endocrinology, Department of Endocrinology, Diabetes and Metabolism, Christian Medical College & Hospital, Vellore, Tamil Nadu, India, Melbourne School of Population and Global Health, Faculty of Medicine, Dentistry and Health Science, The University of Melbourne, Australia.
¹⁵ Professor, The University of Tennessee Health Science Center, Memphis, Tennessee
¹⁶ Professor of Medicine and Chief of the Division of Endocrinology, Diabetology and Metabolism, University of Lausanne, Switzerland
¹⁷ Professor of Endocrinology and Metabolism, Centre Lead for Endocrinology and Deputy Institute Director, William Harvey Research Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, England
¹⁸ University Research Professor and Professor of Medicine (Endocrinology and Metabolism), Obstetrics & Gynecology, and BioMedical Sciences, at Memorial University of Newfoundland in St. John’s, Newfoundland, Canada.
¹⁹ Director of the Division of Reproductive Endocrinology at Boston Medical Center and an Associate Professor of Obstetrics and Gynecology at the Boston University School of Medicine
²⁰ Professor of Medicine, New York Nutrition Obesity Research Center, Division of Endocrinology, Department of Medicine, Columbia University Irving Medical Center, New York, NY, USA.
²¹ Consultant endocrinologist at University Hospitals of Leicester and Honorary Associate Professor at Leicester University
²² Professor of Obstetrics and Gynecology at the University of Vermont and Director of the Division of Reproductive Endocrinology and Infertility. Burlington, Vermont
²³ Director of Clinical Research, Hudson Institute of Medical Research; Consultant Endocrinologist, Monash Medical Centre, Melbourne, Australia
²⁴ Allan L. Drash Endowed Chair, Chief, Division of Endocrinology and Diabetes, UPMC Children’s Hospital of Pittsburgh, Professor of Pediatrics and Cell Biology, University of Pittsburgh School of Medicine, Pittsburgh, PA
²⁵ Professor of Medicine, Knight Cardiovascular Institute and the Division of Endocrinology, and Associate Director, Bob and Charlee Moore Institute for Nutrition and Wellness, Oregon Health and Science University, Portland, OR
²⁶ Centro de Investigaciones Endocrinológicas “Dr. César Bergadá” (CEDIE), CONICET-FEI-División de Endocrinología, Hospital de Niños Ricardo Gutiérrez, Gallo 1330, C1425EFD Buenos Aires; and Departamento de Histología, Biología Celular, Embriología y Genética, Facultad de Medicina, Universidad de Buenos Aires, C1121ABG Buenos Aires, Argentina
²⁷ Professor and Head of Department of Endocrinology, Osmania Medical College and Osmania General Hospital, Hyderabad, India.
²⁸ Professor of Pediatrics, The University of Cincinnati, Department of Pediatrics and Cincinnati Children’s Hospital Medical Center, Division of Endocrinology, Cincinnati, OH, USA
²⁹ Director of the Endocrine/Bone Disease Program, Saint Johns Cancer Institute at Saint John’s Health Center, Santa Monica, CA; Clinical Professor of Medicine, UCLA School of Medicine, Los Angeles, CA
³⁰ Professorial Lecturer, Division of Pediatric Endocrinology and Diabetes, Icahn School of Medicine at Mount Sinai, New York, NY. Emeritus Professor and Chair, Department of Pediatrics, University of Pittsburgh.
³¹ CSO, ELPEN, Inc. & Director, Research Institute, Athens, Greece & Senior Investigator, Human Genetics & Precision Medicine, FORTH (ITE), Heraklion, Greece. Emeritus Scientific Director & Senior Investigator, NICHD, NIH, Bethesda, MD, USA
³² Professor of Medicine, Emeritus, University of Washington, Seattle, WA
³³ Endowed Chair, Cardiovascular Health and Risk Prevention, Pediatric Endocrinology and Diabetes, Cook Children's Medical Center, Fort Worth, TX

PMID: 33729734
Bookshelf ID: NBK568557

Free Books & Documents

Review

Understanding Ethical Dilemmas in Pediatric Lipidology- Genetic Testing in Youth

G. Kevin Donovan et al.

Free Books & Documents

In: Endotext [Internet]. South Dartmouth (MA): MDText.com, Inc.; 2000.

2024 Mar 5.

Authors

G. Kevin Donovan¹, Don P. Wilson²

Book Editors

Affiliations

¹ Director, Pellegrino Center for Clinical Bioethics Professor, Georgetown University Medical Center, Washington, DC.
² Diplomate, American Board of Clinical Lipidology, Endowed Chair, Pediatric Cardiovascular Health and Risk Prevention, Pediatric Endocrinology and Diabetes. Cook Children’s Medical Center, Fort Worth, Texas

Book Affiliations

¹ Professor of Medicine Emeritus, University of California, San Francisco, CA
² Developmental Endocrinology Research Group, University of Glasgow, Glasgow, UK
³ Chief of Medicine at the University of Washington Medical Center and Professor and Vice Chair of the Department of Medicine, University of Washington
⁴ Sr. Physician Scientist, Washington DC VA Medical Center; Professor of Medicine & Rehabilitation Medicine, Georgetown University; Clinical Professor of Medicine, Biochemistry and Molecular Medicine, George Washington University; and Professor of Medicine (Part-time), Johns Hopkins University
⁵ Pediatric Endocrinologist and Associate Research Physician in the Skeletal Diseases and Mineral Homeostasis Section, National Institute of Dental and Craniofacial Research, National Institutes of Health
⁶ Professor of Pediatrics and Endocrinology, Division of Endocrinology, Metabolism and Diabetes, First Department of Pediatrics, National and Kapodistrian University of Athens Medical School, "Aghia Sophia" Children's Hospital, Athens, Greece
⁷ M.D. Ph.D in Gerontology. Honorary Professor of Medicine, Universidad de Alcalá, Madrid. Consultant in Endocrinology, Hospital HLA Guadalajara (Spain).
⁸ Professor of Endocrine Oncology, Erasmus MC and Erasmus MC Cancer Center, Rotterdam, the Netherlands
⁹ Consultant in Diabetes, Endocrinology and General Medicine, Norfolk and Norwich University Hospitals NHS Foundation Trust and University of East Anglia, Norwich, UK.
¹⁰ Professor of Medicine, Division of Endocrinology, Diabetes, and Metabolism, Ohio State University
¹¹ Consultant Endocrinologist, Erasmus MC and Erasmus MC Cancer Center, Rotterdam, the Netherlands
¹² Consultant Endocrinologist, Department of Endocrinology, Bharti Hospital, Karnal, India
¹³ Professor of General Medicine-Endocrinology, 1st Department of Propaedeutic Medicine, National and Kapodistrian University of Athens, Athens, Greece
¹⁴ Professor of Endocrinology, Department of Endocrinology, Diabetes and Metabolism, Christian Medical College & Hospital, Vellore, Tamil Nadu, India, Melbourne School of Population and Global Health, Faculty of Medicine, Dentistry and Health Science, The University of Melbourne, Australia.
¹⁵ Professor, The University of Tennessee Health Science Center, Memphis, Tennessee
¹⁶ Professor of Medicine and Chief of the Division of Endocrinology, Diabetology and Metabolism, University of Lausanne, Switzerland
¹⁷ Professor of Endocrinology and Metabolism, Centre Lead for Endocrinology and Deputy Institute Director, William Harvey Research Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, England
¹⁸ University Research Professor and Professor of Medicine (Endocrinology and Metabolism), Obstetrics & Gynecology, and BioMedical Sciences, at Memorial University of Newfoundland in St. John’s, Newfoundland, Canada.
¹⁹ Director of the Division of Reproductive Endocrinology at Boston Medical Center and an Associate Professor of Obstetrics and Gynecology at the Boston University School of Medicine
²⁰ Professor of Medicine, New York Nutrition Obesity Research Center, Division of Endocrinology, Department of Medicine, Columbia University Irving Medical Center, New York, NY, USA.
²¹ Consultant endocrinologist at University Hospitals of Leicester and Honorary Associate Professor at Leicester University
²² Professor of Obstetrics and Gynecology at the University of Vermont and Director of the Division of Reproductive Endocrinology and Infertility. Burlington, Vermont
²³ Director of Clinical Research, Hudson Institute of Medical Research; Consultant Endocrinologist, Monash Medical Centre, Melbourne, Australia
²⁴ Allan L. Drash Endowed Chair, Chief, Division of Endocrinology and Diabetes, UPMC Children’s Hospital of Pittsburgh, Professor of Pediatrics and Cell Biology, University of Pittsburgh School of Medicine, Pittsburgh, PA
²⁵ Professor of Medicine, Knight Cardiovascular Institute and the Division of Endocrinology, and Associate Director, Bob and Charlee Moore Institute for Nutrition and Wellness, Oregon Health and Science University, Portland, OR
²⁶ Centro de Investigaciones Endocrinológicas “Dr. César Bergadá” (CEDIE), CONICET-FEI-División de Endocrinología, Hospital de Niños Ricardo Gutiérrez, Gallo 1330, C1425EFD Buenos Aires; and Departamento de Histología, Biología Celular, Embriología y Genética, Facultad de Medicina, Universidad de Buenos Aires, C1121ABG Buenos Aires, Argentina
²⁷ Professor and Head of Department of Endocrinology, Osmania Medical College and Osmania General Hospital, Hyderabad, India.
²⁸ Professor of Pediatrics, The University of Cincinnati, Department of Pediatrics and Cincinnati Children’s Hospital Medical Center, Division of Endocrinology, Cincinnati, OH, USA
²⁹ Director of the Endocrine/Bone Disease Program, Saint Johns Cancer Institute at Saint John’s Health Center, Santa Monica, CA; Clinical Professor of Medicine, UCLA School of Medicine, Los Angeles, CA
³⁰ Professorial Lecturer, Division of Pediatric Endocrinology and Diabetes, Icahn School of Medicine at Mount Sinai, New York, NY. Emeritus Professor and Chair, Department of Pediatrics, University of Pittsburgh.
³¹ CSO, ELPEN, Inc. & Director, Research Institute, Athens, Greece & Senior Investigator, Human Genetics & Precision Medicine, FORTH (ITE), Heraklion, Greece. Emeritus Scientific Director & Senior Investigator, NICHD, NIH, Bethesda, MD, USA
³² Professor of Medicine, Emeritus, University of Washington, Seattle, WA
³³ Endowed Chair, Cardiovascular Health and Risk Prevention, Pediatric Endocrinology and Diabetes, Cook Children's Medical Center, Fort Worth, TX

PMID: 33729734
Bookshelf ID: NBK568557

Excerpt

Over the past 25 years there has been an increasing focus on early identification of individuals at-risk of premature cardiovascular disease (CVD), with the goal of improving outcomes and reducing premature CVD-related events such as myocardial infarction and stroke. In 2011, a National Heart, Lung and Blood Institute (NHLBI) Expert Panel recommended universal cholesterol screening of all children, irrespective of health status and family history, beginning at 10 years-of-age (range 9-11) and, if normal, repeated once between 17 and 20 years-of-age (1). Children found to have significant hypercholesterolemia are encouraged to adopt a heart-healthy lifestyle and, when appropriate, offered treatment with lipid-lowering medication, starting at 8 years-of-age and older. Research studies have convincingly demonstrated the safety and effectiveness of lipid-lowering medications in reducing risk and improving outcomes in adults, providing indirect support for universally cholesterol screening of children. Data from individuals with familial hypercholesterolemia (FH), treated for 20 years with pravastatin starting at a young age, have shown no adverse effects of growth, development, or reproductive function during adulthood. Shared decision-making in this population, however, is complex. Unlike most adults who are capable of making informed healthcare decisions, children have a wide range of developmentally-related intellectual and cognitive function, creating unique challenges in their ability to 1) understand long-term risk and benefit; and 2) make informed decisions regarding testing and medical management. In addition, some children have mental health and developmental disabilities that limit their cognitive abilities and judgement. Furthermore, legal guardians have the moral responsibility and legal right to make decisions on behalf of a minor. In this article, we will discuss 1) privacy, discrimination, and the legal rights of children; 2) ethical considerations and concerns and 3) recommendations for clinicians when providing medical care of children with disorders of lipid and lipoprotein metabolism. For complete coverage of all related areas of Endocrinology, please visit our on-line FREE web-text, WWW.ENDOTEXT.ORG.

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References

1. Expert Panel on Integrated Guidelines for Cardiovascular Health and Risk Reduction in Children and Adolescents, National Heart, Lung, and Blood Institute. Expert Panel on Integrated Guidelines for Cardiovascular Health and Risk Reduction in Children and Adolescents: summary report. Pediatrics. 2011;128(Suppl 5):S213-S256. doi: 10.1542/peds.2009-2107C - DOI - PMC - PubMed
1. Wilson DP, Gidding SS. Atherosclerosis: Is a cure in sight? J Clin Lipidol. 2015;9(5 Suppl):1. doi:S1933-2874(15)00266-4 - PubMed
1. Robinson JG, Gidding SS. Curing atherosclerosis should be the next major cardiovascular prevention goal. J Am Coll Cardiol. 2014;63(25 Pt A):2779-2785. doi:S0735-1097(14)02138-X - PubMed
1. Ruck MD, Abramovitch R, Keating DP. Children's and adolescents' understanding of rights: balancing nurturance and self-determination. Child Dev. 1998;69(2):404-417. - PubMed
1. Melton GB. Children's concepts of their rights. J Clin Child Psychol. 1980;9(3):186-190. doi: 10.1080/15374418009532985 - DOI

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Understanding Ethical Dilemmas in Pediatric Lipidology- Genetic Testing in Youth

Affiliations

Book Affiliations

Understanding Ethical Dilemmas in Pediatric Lipidology- Genetic Testing in Youth

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Book Editors

Affiliations

Book Affiliations

Excerpt

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References

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