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1. Full Text Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents
by Botkin, Jeffrey R and Belmont, John W and Berg, Jonathan S and Berkman, Benjamin E and Bombard, Yvonne and Holm, Ingrid A and Levy, Howard P and Ormond, Kelly E and Saal, Howard M and Spinner, Nancy B and Wilfond, Benjamin S and McInerney, Joseph D and ASHG Workgrp Pediat Genetic Genomi
American journal of human genetics, ISSN 0002-9297, 07/2015, Volume 97, Issue 1, pp. 6 - 21
Life Sciences & Biomedicine | Genetics & Heredity | Science & Technology | Laws, regulations and rules | Youth | Teenagers | Children | Management | Health aspects | Genetic screening | Ethical aspects | Medical ethics | Ethics | Genetic testing | Health education | Genomics | Index Medicus | ASHG Position Statement
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2. Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests
by Holm, Ingrid A
Genetic testing and molecular biomarkers, ISSN 1945-0265, 03/2017, Volume 21, Issue 3, pp. 155 - 158
ethics | return of genomic results | Consent | pediatrics | Biochemistry & Molecular Biology | Genetics & Heredity | Life Sciences & Biomedicine | Science & Technology | Models, Theoretical | Confidentiality - ethics | Bioethical Issues | Humans | Adolescent | Child, Preschool | Female | Male | Biological Specimen Banks - ethics | Child | Ethics | Weighing | Autonomy | Parents
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3. Full Text Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US
by Sanderson, Saskia C and Brothers, Kyle B and Mercaldo, Nathaniel D and Clayton, Ellen Wright and Antommaria, Armand H. Matheny and Aufox, Sharon A and Brilliant, Murray H and Campos, Diego and Carrell, David S and Connolly, John and Conway, Pat and Fullerton, Stephanie M and Garrison, Nanibaa’ A and Horowitz, Carol R and Jarvik, Gail P and Kaufman, David and Kitchner, Terrie E and Li, Rongling and Ludman, Evette J and McCarty, Catherine A and McCormick, Jennifer B and McManus, Valerie D and Myers, Melanie F and Scrol, Aaron and Williams, Janet L and Shrubsole, Martha J and Schildcrout, Jonathan S and Smith, Maureen E and Holm, Ingrid A
American journal of human genetics, ISSN 0002-9297, 03/2017, Volume 100, Issue 3, pp. 414 - 427
informed consent | broad consent | biobank research | biorepository research | data sharing | tiered consent | Life Sciences & Biomedicine | Genetics & Heredity | Science & Technology | Biomedical Research - ethics | Information Dissemination - ethics | Public Opinion | United States | Electronic Health Records - ethics | Genomics | Humans | Middle Aged | Informed Consent - ethics | Male | Socioeconomic Factors | Young Adult | Privacy | Adolescent | Adult | Female | Aged | Genome, Human | Biological Specimen Banks - ethics | Genetic research | Social aspects | Medical research | Databases | Consent | Experiments | Information sharing | Index Medicus
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4. Full Text A clinician's guide to X‐linked hypophosphatemia
by Carpenter, Thomas O and Imel, Erik A and Holm, Ingrid A and Jan de Beur, Suzanne M and Insogna, Karl L
Journal of bone and mineral research, ISSN 0884-0431, 07/2011, Volume 26, Issue 7, pp. 1381 - 1388
Rickets | Osteomalacia | FGF23 | Phosphate | Phex | Life Sciences & Biomedicine | Endocrinology & Metabolism | Science & Technology | Fundamental and applied biological sciences. Psychology | Biological and medical sciences | Vertebrates: osteoarticular system, musculoskeletal system | Skeleton and joints | Familial Hypophosphatemic Rickets - therapy | Radiography | Familial Hypophosphatemic Rickets - physiopathology | Humans | Familial Hypophosphatemic Rickets - pathology | Familial Hypophosphatemic Rickets - diagnostic imaging | Genetic Diseases, X-Linked | Practice Guidelines as Topic | Index Medicus | osteomalacia | rickets | PHEX
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5. Full Text Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between
by Amendola, Laura M and Berg, Jonathan S and Brothers, Kyle and Clayton, Ellen W and Chung, Wendy and Evans, Barbara J and Fullerton, Stephanie M and Gallego, Carlos J and Garrison, Nanibaa’ A and Gray, Stacy W and Holm, Ingrid A and Kullo, Iftikhar J and Lehmann, Lisa Soleymani and McCarty, Cathy and Prows, Cynthia A and Sharp, Richard R and Salama, Joseph and Sanderson, Saskia and Van Driest, Sara L and Williams, Marc S and Wolf, Wendy A and Myers, Melanie and Vinks, Sander and Crosslin, David and Leppig, Kathy and Wicklund, Cathy and Chute, Christopher and Lynch, John and De Andrade, Mariza and Heit, John and Brilliant, Murray and Kitchner, Terrie and Ritchie, Marylyn and Persell, Stephen and Rasmussen-Torvik, Laura and McGregor, Tracy and Antommaria, Armand and Chiavacci, Rosetta and Ledbetter, David and Williams, Janet and Hartzler, Andrea and Vitek, Carolyn R. Rohrer and Frost, Norm and Ferryman, Kadija and Horowitz, Carol and Zinberg, Randi and Pan, Vivian and Long, Rochelle and Ramos, Erin and Odgis, Jackie and Wise, Anastasia and Hull, Sara and Gitlin, Jonathan and Green, Robert and Metterville, Danielle and McGuire, Amy and Kong, Sek Won and Trinidad, Sue and Veenstra, David and Roche, Myra and Skinner, Debra and Raspberry, Kelly and O’Daniel, Julianne and Parsons, Will and Eng, Christine and Hilsenbeck, Susan and Karavite, Dean and Conlin, Laura and Spinner, Nancy and Krantz, Ian and Falk, Marni and Santani, Avni and Dechene, Elizabeth and Bernhardt, Barbara and Schuetze, Scott and Everett, Jessica and Gornick, Michele Caroline and Wilfond, Ben and Tabor, Holly and Lemke, Amy A and Goddard, Katrina and East, Kelly and Barsh, Greg and Van Allen, Eliezer and Garber, Judy and Zawati, Ma’n and Lewis, Michelle and Savage, Sarah and Smith, Maureen and Roychowdhury, Sameek and Anan, Charlisse Caga and Hindorff, Lucia and Hutter, Carolyn and King, Rosalind and Li, Rongling and Lockhart, Nicole and McEwen, Jean and Scholes, Derek and Sun, Kathie and Burke, Wylie and eMERGE Act-ROR Committee and CERC Committee and CSER Act-ROR Working Group and CERC Comm and CSER Act-ROR Working Grp and eMERGE Act-ROR Comm
American journal of human genetics, ISSN 0002-9297, 06/2014, Volume 94, Issue 6, pp. 818 - 826
Life Sciences & Biomedicine | Genetics & Heredity | Science & Technology | Biomedical Research - ethics | Genetics, Medical - ethics | Patient Access to Records - ethics | Genetic Privacy | Humans | Societies, Scientific | Population Groups | High-Throughput Nucleotide Sequencing | Disclosure | Genome, Human | Genomics - ethics | Genetic research | Research | Nucleotide sequencing | Population genetics | DNA sequencing | Health care industry | Morality | Mutation | Genomics | Medical ethics | Index Medicus
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6. Full Text A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States
by Garrison, Nanibaa A and Sathe, Nila A and Antommaria, Armand H. Matheny and Holm, Ingrid A and Sanderson, Saskia C and Smith, Maureen E and McPheeters, Melissa L and Clayton, Ellen W
Genetics in medicine, ISSN 1098-3600, 07/2016, Volume 18, Issue 7, pp. 663 - 671
biobank; broad consent; data sharing; systematic review; tiered consent | Life Sciences & Biomedicine | Genetics & Heredity | Science & Technology | Index Medicus | broad consent | biobank | Systematic Review | data sharing | tiered consent
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7. Full Text The BabySeq project: Implementing genomic sequencing in newborns
by Holm, Ingrid A and Agrawal, Pankaj B and Ceyhan-Birsoy, Ozge and Christensen, Kurt D and Fayer, Shawn and Frankel, Leslie A and Genetti, Casie A and Krier, Joel B and LaMay, Rebecca C and Levy, Harvey L and McGuire, Amy L and Parad, Richard B and Park, Peter J and Pereira, Stacey and Rehm, Heidi L and Schwartz, Talia S and Waisbren, Susan E and Yu, Timothy W and Green, Robert C and Beggs, Alan H and BabySeq Project Team and The BabySeq Project Team
BMC pediatrics, ISSN 1471-2431, 07/2018, Volume 18, Issue 1, pp. 225 - 225
Newborn screening | Newborn sequencing | Randomized trial | Whole exome sequencing | Ethical, legal, social implications | Methods | Life Sciences & Biomedicine | Pediatrics | Science & Technology | Infants (Newborn) | Usage | Analysis | Clinical trials | Genetic aspects | Nucleotide sequencing | Health aspects | DNA sequencing | Medicine | Health care | Early intervention | Ethics | Genomics | Families & family life | Genetics | Genomes | Family medical history | FDA approval | Medical screening | Index Medicus
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8. Full Text Using Newborn Sequencing to Advance Understanding of the Natural History of Disease
by Holm, Ingrid A
The Hastings Center report, ISSN 0093-0334, 07/2018, Volume 48, Issue S2, pp. S45 - S46
Ethics | Social Sciences | Social Sciences - Other Topics | Life Sciences & Biomedicine | Social Sciences, Biomedical | Health Care Sciences & Services | Medical Ethics | Biomedical Social Sciences | Science & Technology | Infants (Newborn) | Genetic aspects | Research | Nucleotide sequencing | Gene expression | Pediatric research | Health aspects | DNA sequencing | Genetic disorders
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9. Full Text Physicians’ perspectives on receiving unsolicited genomic results
by Pet, Douglas B and Holm, Ingrid A and Williams, Janet L and Myers, Melanie F and Novak, Laurie L and Brothers, Kyle B and Wiesner, Georgia L and Clayton, Ellen W
Genetics in medicine, ISSN 1098-3600, 02/2019, Volume 21, Issue 2, pp. 311 - 318
Attitudes | Ethics | Unsolicited genomic results | Physicians | Return of research results | Life Sciences & Biomedicine | Genetics & Heredity | Science & Technology | Attitude of Health Personnel | Humans | Genomics - standards | Adult | Decision Support Systems, Clinical | Female | Practice Patterns, Physicians | Primary Health Care | Physicians - psychology | Electronic Health Records | Genomics - trends | Genome, Human - genetics | Genetic Information Nondiscrimination Act 2008-US | Working groups | Genomics | Medical records | Genomes | Research | Patients | Primary care | Consortia | Hospitals | Precision medicine | Genetics | Clinical medicine | Electronic health records | Patient Protection & Affordable Care Act 2010-US | Index Medicus | unsolicited genomic results | physicians | ethics | return of research results | attitudes
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