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1. Full Text Research Consent at the Age of Majority: Preferable but not Obligatory
by Kyle B Brothers and Benjamin S Wilfond
Pediatrics, ISSN 0031-4005, 08/2018, Volume 142, Issue 2, p. 1
In this issue of Pediatrics, Berkman et al argue that parental permission to obtain samples is sufficient to continue storing them and using them for research... 
Ethics | Pediatrics | Parents & parenting | Consent | Review boards | Research | Children | Age
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2. Full Text Bespoke Babies: Genome Editing in Cystic Fibrosis Embryos
by Brothers, Kyle B and Devereaux, Mary and Sade, Robert M
The Annals of thoracic surgery, ISSN 0003-4975, 05/2019
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3. Full Text Tensions in ethics and policy created by national precision medicine programs
by Minari, Jusaku and Brothers, Kyle B and Morrison, Michael
Human Genomics, ISSN 1473-9542, 01/2018, Volume 12, Issue 1, pp. 22 - 22
Precision medicine promises to use genomics and other data-intensive approaches to improve diagnosis and develop new treatments for major diseases, but also... 
Privacy | Precision medicine | Consent | Genomics | Insurance | Sustainability | BIOMEDICAL-RESEARCH | INCIDENTAL FINDINGS | RECOMMENDATIONS | PERSPECTIVES | GENETICS & HEREDITY | GENETIC DISCRIMINATION | HEALTH-CARE | CLINICAL EXOME | PARTICIPANTS | Translational Medical Research - ethics | United States | Humans | Japan | Informed Consent - ethics | United Kingdom | Genome, Human - genetics | Precision Medicine - ethics | Index Medicus
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4. Full Text State-offered ethnically targeted reproductive genetic testing
by Clayton, Ellen Wright and Brothers, Kyle B
Genetics in Medicine, ISSN 1098-3600, 02/2016, Volume 18, Issue 2, pp. 126 - 127
GENETICS & HEREDITY | Ethnic Groups | Genetic Testing | Genetic Counseling | Humans | Index Medicus
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5. Full Text Citizen Science on Your Smartphone: An ELSI Research Agenda
by Rothstein, Mark A and Wilbanks, John T and Brothers, Kyle B
The Journal of Law, Medicine & Ethics, ISSN 1073-1105, 2015, Volume 43, Issue 4, pp. 897 - 903
The prospect of newly‐emerging, technology‐enabled, unregulated citizen science health research poses a substantial challenge for traditional research ethics.... 
Informed Consent | Biomedical Research - ethics | Biomedical Research - legislation & jurisprudence | Mobile Applications | Telemedicine | Humans | Research Subjects | Smartphone | Crowdsourcing | Medical research | Citizens | Bioethics | Criteria | Recruitment | Smartphones | Privacy | Confidentiality | Information sharing | Health research | Informed consent | Research ethics | Health technology assessment
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6. Full Text Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine
by Green, Robert C and Green, Robert and Goddard, Katrina and Goddard, Katrina A.B and Jarvik, Gail P and Amendola, Laura M and Amendola, Laura and Appelbaum, Paul S and Berg, Jonathan S and Bernhardt, Barbara A and Biesecker, Barbara B and Biesecker, Leslie G and Biswas, Sawona and Blout, Carrie L and Bowling, Kevin M and Brothers, Kyle B and Burke, Wylie and Caga-anan, Charlisse F and Chinnaiyan, Arul M and Chung, Wendy K and Chung, Wendy and Clayton, Ellen and Clayton, Ellen W and Cooper, Greg M and Cooper, Gregory M and East, Kelly and East, Kelly M and Evans, James P and Evans, Barbara and Fullerton, Stephanie M and Garraway, Levi A and Garrett, Jeremy R and Gray, David E and Gray, Stacy W and Henderson, Gail E and Hindorff, Lucia A and Holm, Ingrid A and Lewis, Michelle and Lewis, Katie and Lewis, Michelle Huckaby and Hutter, Carolyn M and Janne, Pasi A and Joffe, Steve and Joffe, Steven and Kaufman, Dave and Kaufman, David and Knoppers, Bartha and Knoppers, Bartha M and Koenig, Barbara A and Krantz, Ian and Krantz, Ian D and Manolio, Teri A and McCullough, Laurence and McEwen, Jean and McGuire, Amy and Muzny, Donna and Myers, Richard M and Nickerson, Deborah A and Ou, Jeffrey and Parsons, Will and Parsons, Donald W and Petersen, Gloria and Petersen, Gloria M and Plon, Sharon and Plon, Sharon E and Rehm, Heidi L and Roberts, Scott and Roberts, J. Scott and Robinson, Marguerite E and Robinson, Jill O and Robinson, Dan and Salama, Joseph and Salama, Joseph S and Scollon, Sarah and Sharp, Richard R and Shirts, Brian and Shirts, Brian H and Spinner, Nancy B and Tabor, Holly K and Tarczy-Hornoch, Peter and Veenstra, David L and Wagle, Nikhil and Weck, Karen and Wilfond, Ben and Wilfond, Benjamin S and Wilhelmsen, Kirk C and Wilhelmsen, Kirk and Wolf, Susan M and Wynn, Julia and Yu, Joon-Ho and Amaral, Michelle and Aronson, Samuel J and Arora, Shubhangi and Azzariti, Danielle R and Barsh, Greg S and Bebin, E.M and Brown, Brian L and Burt, Amber A and Byers, Peter H and Calikoglu, Muge G and ... and CSER Consortium
The American Journal of Human Genetics, ISSN 0002-9297, 06/2016, Volume 98, Issue 6, pp. 1051 - 1066
Despite rapid technical progress and demonstrable effectiveness for some types of diagnosis and therapy, much remains to be learned about clinical genome and... 
RESEARCH PARTICIPANTS | ACMG RECOMMENDATIONS | PERCEIVED UTILITY | BEHAVIORAL ECONOMICS | GENETICS & HEREDITY | WHOLE-EXOME | INCIDENTAL-FINDINGS | MEDSEQ PROJECT | OBTAINING INFORMED-CONSENT | ELECTRONIC HEALTH RECORD | GENETIC RESEARCH FINDINGS | Evidence-Based Practice | United States | Humans | Clinical Trials as Topic | Cardiovascular Diseases - genetics | Exome - genetics | National Human Genome Research Institute (U.S.) | Polymorphism, Single Nucleotide - genetics | Adult | Biomedical Research | Population Groups | Software | Genome, Human | Genomics - methods | High-Throughput Nucleotide Sequencing - methods | Child | Genetic research | Nucleotide sequencing | Methods | DNA sequencing | Medical diagnosis | Electronic health records | Genomics | Genes | Children & youth | Index Medicus
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7. Full Text Citizen Science on Your Smartphone: An ELSI Research Agenda
: Currents in Contemporary Bioethics
by Rothstein, Mark A and Wilbanks, John T and Brothers, Kyle B
The Journal of Law, Medicine & Ethics, ISSN 1073-1105, 12/2015, Volume 43, Issue 4, pp. 897 - 903
Evaluation | Analysis | Bioethics | E-health | Research | Citizen scientists | Smart phones
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8. Ethical and legal considerations for pediatric biobank consent: Current and future perspectives
by Brothers, Kyle B and Goldenberg, Aaron J
Personalized Medicine, ISSN 1741-0541, 11/2016, Volume 13, Issue 6, pp. 597 - 607
Innovations in laboratory and information technologies continue to drive the expansion of pediatric biorepository research, with collections of biosamples and... 
Pediatrics | Dynamic consent | Adolescent assent | Biorepository research | Informed consent | Participant engagement | Parental permission | dynamic consent | parental permission | adolescent assent | ASSENT | CHILDREN | DNA BIOBANK | RECORDS | participant engagement | RETURN | INFORMED-CONSENT | GENOMICS | informed consent | pediatrics | PHARMACOLOGY & PHARMACY | EXPERIENCE | PERSONALIZED MEDICINE | biorepository research | PARTICIPANTS
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9. Full Text Gesundheitliche Eigenverantwortung im Kontext Individualisierter Medizin
by Langanke, Martin and Fischer, Tobias and Erdmann, Pia and Brothers, Kyle B
Ethik in der Medizin, ISSN 0935-7335, 9/2013, Volume 25, Issue 3, pp. 243 - 250
Der Aufsatz analysiert den Konnex zwischen Individualisierter Medizin und der Forderung nach mehr gesundheitlicher Eigenverantwortung, der oft als plausibel... 
Krankheitsprädiktion | Individualized medicine | Medicine & Public Health | Individualisierte Medizin | Gynecology | Personal responsibility for health | Intensive / Critical Care Medicine | Psychotherapy | Eigenverantwortung | Medicine/Public Health, general | Reproductive Medicine | Disease prediction
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10. Full Text Professionally responsible disclosure of genomic sequencing results in pediatric practice
by McCullough, Laurence B and Brothers, Kyle B and Chung, Wendy K and Joffe, Steven and Koenig, Barbara A and Wilfond, Benjamin and Yu, Joon-Ho and CSER Consortium Pediat Working Grp and Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group and on behalf of the Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group
Pediatrics, ISSN 0031-4005, 10/2015, Volume 136, Issue 4, pp. e974 - e982
Genomic sequencing is being rapidly introduced into pediatric clinical practice. The results of sequencing are distinctive for their complexity and subsequent... 
INCIDENTAL FINDINGS | EXOME | PEDIATRICS | ERA | CHILDREN | Informed Consent By Minors | Child Welfare - ethics | Humans | Pediatrics - ethics | Adolescent | Sequence Analysis, DNA - ethics | Parental Consent - ethics | Child | Truth Disclosure - ethics | Genomics - ethics | Pediatrics | Informed consent | Clinical medicine | Physicians | Genomics | Index Medicus | Abridged Index Medicus | 21.00 | Special | 25.00
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11. Full Text Gesundheitliche Eigenverantwortung im Kontext Individualisierter Medizin
by Langanke, Martin and Fischer, Tobias and Erdmann, Pia and Brothers, Kyle B
Ethik in der Medizin, ISSN 0935-7335, 09/2013, Volume 25, Issue 3, p. 243
Der Aufsatz analysiert den Konnex zwischen Individualisierter Medizin und der Forderung nach mehr gesundheitlicher Eigenverantwortung, der oft als plausibel... 
Medical colleges | Analysis | Health care reform
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12. Full Text Ethical issues in pediatric pharmacogenomics
by Brothers, Kyle B
The journal of pediatric pharmacology and therapeutics : JPPT : the official journal of PPAG, ISSN 1551-6776, 07/2013, Volume 18, Issue 3, pp. 192 - 198
ethics | pharmacogenomics | pediatrics
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13. 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
The American Journal of Human Genetics, ISSN 0002-9297, 03/2017, Volume 100, Issue 3, pp. 414 - 427
Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and... 
informed consent | broad consent | biobank research | biorepository research | data sharing | tiered consent | BROAD CONSENT | RESEARCH PARTICIPANTS | POPULATION | INFORMED-CONSENT | INFORMATION | PREFERENCES | PERSPECTIVES | GENETICS & HEREDITY | TUSKEGEE | NANOTECHNOLOGY | GENOME-WIDE ASSOCIATION | 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 | Consent | Experiments | Information sharing | Data bases | Index Medicus
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14. Full Text Informed consent in the era of biobanks
by Brothers, Kyle B
Genome Medicine, ISSN 1756-994X, 01/2013, Volume 5, Issue 1, pp. 4 - 4
Biorepositories collecting human specimens and health information have proliferated in recent years. Efforts to set a range of policies related to... 
GENETICS & HEREDITY
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15. Full Text Genomic diagnosis for children with intellectual disability and/or developmental delay
by Bowling, Kevin M and Thompson, Michelle L and Amaral, Michelle D and Finnila, Candice R and Hiatt, Susan M and Engel, Krysta L and Cochran, J.Nicholas and Brothers, Kyle B and East, Kelly M and Gray, David E and Kelley, Whitley V and Lamb, Neil E and Lose, Edward J and Rich, Carla A and Simmons, Shirley and Whittle, Jana S and Weaver, Benjamin T and Nesmith, Amy S and Myers, Richard M and Barsh, Gregory S and Bebin, E.Martina and Cooper, Gregory M
Genome Medicine, ISSN 1756-994X, 05/2017, Volume 9, Issue 1, pp. 43 - 43
Background: Developmental disabilities have diverse genetic causes that must be identified to facilitate precise diagnoses. We describe genomic data from 371... 
CSER | Intellectual disability | Clinical sequencing | Developmental delay | De novo | EXOME | ATROPHY | DISORDERS | GENETIC-VARIANTS | PHENOTYPES | MEDICINE | DISEASE | GENETICS & HEREDITY | FRAMEWORK | MUTATIONS | ASSOCIATION | Humans | Child, Preschool | Infant | Male | Developmental Disabilities - genetics | DNA Copy Number Variations | Intellectual Disability - genetics | Exome | Young Adult | Intellectual Disability - diagnosis | Adolescent | Adult | Female | Mutation | Genomics - methods | Child | Developmental Disabilities - diagnosis | Sequence Analysis, DNA - methods | Laboratories | Intellectual disabilities | Genomics | Genes | Genomes | Mitochondrial DNA | Genetic diversity | Research | Consortia | Autism | Genetics | Genetic testing | Children | Diagnosis | Deoxyribonucleic acid--DNA | Index Medicus
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16. Full Text Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism
by Garrison, Nanibaa' A and Brothers, Kyle B and Goldenberg, Aaron J and Lynch, John A
The American Journal of Bioethics, ISSN 1526-5161, 01/2019, Volume 19, Issue 1, pp. 51 - 63
As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for... 
genetic exceptionalism | stasis theory | bioethics | genomic contextualism | ACMG RECOMMENDATIONS | POPULATION | INFORMATION | SOCIAL SCIENCES, BIOMEDICAL | MEDICAL ETHICS | SOCIAL ISSUES | MEDICINE | HERITABILITY | ATTITUDES | INCIDENTAL FINDINGS | CONSENT | HEALTH | STASIS | ETHICS
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17. Full Text Factors Associated with Attendance after Referral to a Pediatric Weight Management Program
by Shaffer, Laura A., PhD and Brothers, Kyle B., MD, PhD and Burkhead, Thomas A., MEng and Yeager, Ray, MPH and Myers, John A., PhD and Sweeney, Brooke, MD
Journal of Pediatrics, The, ISSN 0022-3476, 2016, Volume 172, pp. 35 - 39
Objective To evaluate factors affecting attendance or nonattendance at an initial interprofessional pediatric weight management visit after referral. We... 
Pediatrics | SEVERE OBESITY | OVERWEIGHT | PREVENTION | PEDIATRICS | ATTRITION | CHILDREN | BMI | Humans | Risk Factors | Adolescent | Female | Logistic Models | Male | Pediatric Obesity - therapy | Referral and Consultation - statistics & numerical data | Patient Compliance | Child | Health Behavior | Weight Reduction Programs - statistics & numerical data | Obesity | Medical colleges | Hospitals | Index Medicus | Abridged Index Medicus
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18. Full Text Secondary findings from clinical genomic sequencing: prevalence, patient perspectives, family history assessment, and health-care costs from a multisite study
by Hart, M. Ragan and Biesecker, Barbara B and Blout, Carrie L and Christensen, Kurt D and Amendola, Laura M and Bergstrom, Katie L and Biswas, Sawona and Bowling, Kevin M and Brothers, Kyle B and Conlin, Laura K and Cooper, Greg M and Dulik, Matthew C and East, Kelly M and Everett, Jessica N and Finnila, Candice R and Ghazani, Arezou A and Gilmore, Marian J and Goddard, Katrina A. B and Jarvik, Gail P and Johnston, Jennifer J and Kauffman, Tia L and Kelley, Whitley V and Krier, Joel B and Lewis, Katie L and McGuire, Amy L and McMullen, Carmit and Ou, Jeffrey and Plon, Sharon E and Rehm, Heidi L and Richards, C. Sue and Romasko, Edward J and Miren Sagardia, Ane and Spinner, Nancy B and Thompson, Michelle L and Turbitt, Erin and Vassy, Jason L and Wilfond, Benjamin S and Veenstra, David L and Berg, Jonathan S and Green, Robert C and Biesecker, Leslie G and Hindorff, Lucia A
Genetics in Medicine, ISSN 1098-3600, 05/2019, Volume 21, Issue 5, pp. 1100 - 1110
Purpose: Clinical sequencing emerging in health care may result in secondary findings (SFs). Methods: Seventy-four of 6240 (1.2%) participants who underwent... 
genomic sequencing | health-care resource utilization | secondary findings | INCIDENTAL FINDINGS | EXOME | DESIGN | VARIANTS | RECOMMENDATIONS | GENETICS & HEREDITY | AMERICAN-COLLEGE | MEDICAL GENETICS | RANDOMIZED CONTROLLED-TRIAL | Consortia
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