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1. Full Text Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research
by Middleton, Anna and Morley, Katherine I and Bragin, Eugene and Firth, Helen V and Hurles, Matthew E and Wright, Caroline F and Parker, Michael and DDD Study and DDD study and on behalf of the DDD study
European Journal of Human Genetics, ISSN 1018-4813, 01/2016, Volume 24, Issue 1, pp. 21 - 29
Genome-wide sequencing in a research setting has the potential to reveal health-related information of personal or clinical utility for the study participant.... 
EXOME | INVESTIGATORS | RECOMMENDATIONS | BIOCHEMISTRY & MOLECULAR BIOLOGY | PERSPECTIVES | GENETICS & HEREDITY | GENETICS PROFESSIONALS | PARTICIPANTS | Information Dissemination - ethics | Cross-Sectional Studies | Attitude | Humans | Middle Aged | Research Personnel - psychology | Incidental Findings | Male | Chromosome Mapping | Sequence Analysis, DNA | High-Throughput Nucleotide Sequencing - ethics | Exome | Genetic Privacy - ethics | Informed Consent | Adult | Female | Surveys and Questionnaires | Genome, Human | Precision Medicine | Medical personnel | Professionals | Genomics | Licenses | Attitudes | Bioethics | Genomes | Research | Studies | Human subjects | Researchers | Genetic counseling | Genetics | Stakeholders | Index Medicus
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2. Full Text Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project
by Sanderson, Saskia C and Linderman, Michael D and Suckiel, Sabrina A and Diaz, George A and Zinberg, Randi E and Ferryman, Kadija and Wasserstein, Melissa and Kasarskis, Andrew and Schadt, Eric E
European Journal of Human Genetics, ISSN 1018-4813, 01/2016, Volume 24, Issue 1, pp. 14 - 20
Whole exome/genome sequencing (WES/WGS) is increasingly offered to ostensibly healthy individuals. Understanding the motivations and concerns of research... 
RISK | MEDICINE | BIOCHEMISTRY & MOLECULAR BIOLOGY | ATTITUDES | GENETICS & HEREDITY | Information Dissemination - ethics | Humans | Middle Aged | Male | Chromosome Mapping | Sequence Analysis, DNA | Precision Medicine - ethics | High-Throughput Nucleotide Sequencing - ethics | Exome | Genetic Privacy - ethics | Informed Consent | Adult | Female | Motivation - ethics | Aged | Genome, Human | Longitudinal Studies | Health care | Phenotypes | Genomics | Attitudes | Exploration | Genomes | Medicine | Studies | Hypotheses | Information sharing | Genetics | Public health | Genotypes | Index Medicus
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3. Full Text Am I my Family's Keeper? : Disclosure Dilemmas in Next Generation Sequencing
by Wouters, Roel H P and Bijlsma, Rhodé M and Ausems, Margreet G E M|info:eu-repo/dai/nl/18756969X and van Delden, Johannes J M|info:eu-repo/dai/nl/086541331 and Voest, Emile E and Bredenoord, Annelien L|info:eu-repo/dai/nl/240834666
Human Mutation, ISSN 1059-7794, 09/2016, Volume 37, Issue 12, pp. 1257–1262 - 1262
Ever since genetic testing is possible for specific mutations, ethical debate has sparked on the question of whether professionals have a duty to warn not only... 
unsolicited finding | moral accountability nudge | NGS | ethics | next‐generation sequencing | libertarian paternalism | next-generation sequencing | MEMBERS | GENETIC INFORMATION | WARN | CARE | AT-RISK RELATIVES | DUTY | GENETICS & HEREDITY | CANCER-RISK | COMMUNICATION | PARTICIPANTS | Humans | Moral Obligations | Incidental Findings | Disclosure - ethics | Family | Professional Role | High-Throughput Nucleotide Sequencing - ethics | Disease susceptibility | Psychiatric services | Genetic screening | Informed consent | Duty to warn | Genetic testing | Mutation | Patients | Index Medicus
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4. Full Text Reporting practices for variants of uncertain significance from next generation sequencing technologies
by Vears, Danya F and Sénécal, Karine and Borry, Pascal
European Journal of Medical Genetics, ISSN 1769-7212, 10/2017, Volume 60, Issue 10, pp. 553 - 558
The nature of next generation sequencing technologies (NGS) results in the generation of large amounts of data and the identification of numerous variants, for... 
Bioethics | Diagnostic | Genetic testing | Genomic sequencing | VUS | VOUS | COLLEGE | GENETICS & HEREDITY | STANDARDS | MEDICAL GENETICS | Attitude of Health Personnel | Genetic Testing - standards | Australasia | Europe | Humans | Sequence Analysis, DNA - ethics | Sequence Analysis, DNA - standards | Genetic Testing - ethics | Mutation - genetics | High-Throughput Nucleotide Sequencing - ethics | High-Throughput Nucleotide Sequencing - standards | Canada | Mandatory Reporting | Research Report - standards | Practice Guidelines as Topic | Analysis | Medical ethics | Index Medicus
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5. Full Text On the ethics of clinical whole genome sequencing of children
by May, Thomas and Zusevics, Kaija L and Strong, Kimberly A
Pediatrics, ISSN 0031-4005, 08/2013, Volume 132, Issue 2, pp. 207 - 209
Ethics | Genetic testing | ethics | PEDIATRICS | genetic testing | Ethics, Medical | Humans | Genetic Testing - ethics | Ethics Committees | Genome, Human - genetics | High-Throughput Nucleotide Sequencing - ethics | Translational Medical Research - ethics | Exome - genetics | Pilot Projects | Genetic Privacy | Genetic Research - ethics | Child | Wisconsin | Genetic aspects | Children | Diagnosis | Genetic screening | Ethical aspects | Diseases | Index Medicus | Abridged Index Medicus
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6. Full Text Duty to Warn in the Era of Next Generation Sequencing
by Latham Schwark, Alicia and Walsh, Michael F
The American Journal of Bioethics, ISSN 1526-5161, 07/2018, Volume 18, Issue 7, pp. 79 - 80
MEDICAL ETHICS | SOCIAL ISSUES | SOCIAL SCIENCES, BIOMEDICAL | ETHICS | Humans | Moral Obligations | Disclosure - ethics | Genetic Testing - ethics | Professional Role | Duty to Warn - legislation & jurisprudence | Genetic Counseling - ethics | Genetic Predisposition to Disease - prevention & control | High-Throughput Nucleotide Sequencing - ethics | Index Medicus | Bioethics
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7. Full Text Impact of next generation sequencing on the organization and funding of returning research results: Survey of Canadian Research Ethics Boards members
by Groisman, Iris Jaitovich and Godard, Beatrice
PLoS ONE, ISSN 1932-6203, 05/2016, Volume 11, Issue 5, pp. e0154965 - e0154965
Research Ethics Boards (REBs) are expected to evaluate protocols planning the use of Next Generation Sequencing technologies (NGS), assuring that any genomic... 
INCIDENTAL FINDINGS | GENOMIC RESEARCH | INFORMED-CONSENT | MULTIDISCIPLINARY SCIENCES | CHAIR PERSPECTIVES | GENETIC RESEARCH | PARTICIPANTS | CHALLENGES | High-Throughput Nucleotide Sequencing - economics | Canada | Research Support as Topic - economics | Humans | Incidental Findings | Surveys and Questionnaires | Genetic Counseling | Ethics, Research | High-Throughput Nucleotide Sequencing - ethics | Analysis | Finance | Genetic research | Research grants | Nucleotide sequencing | Ethical aspects | DNA sequencing | Medical research | Financial factors | Funding | Genomes | Genetic screening | Medicine | Studies | Ethics | Genetic counseling | Researchers | Ethical standards | Councils | Consent | Principles | Index Medicus
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8. Full Text Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing (vol 24, pg 1559, 2016)
by Senecal, K and Thys, K and Vears, DF and Van Assche, K and Knoppers, BM and Borry, P
EUROPEAN JOURNAL OF HUMAN GENETICS, ISSN 1018-4813, 05/2017, Volume 25, Issue 5, pp. 658 - 658
The development of next-generation sequencing (NGS) technologies are revolutionizing medical practice, facilitating more accurate, sophisticated and... 
BIOCHEMISTRY & MOLECULAR BIOLOGY | GENETICS & HEREDITY | Decision Making | Informed Consent By Minors - legislation & jurisprudence | Genetic Testing - legislation & jurisprudence | Humans | Sequence Analysis, DNA - ethics | Genetic Testing - ethics | High-Throughput Nucleotide Sequencing - ethics | Informed Consent By Minors - standards | Canada | European Union | Clinical Decision-Making | Adolescent | Adult | Child
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9. Targeted next-generation sequencing panels for monogenetic disorders in clinical diagnostics: The opportunities and challenges
by De Koning, Tom J and Jongbloed, Jan D.H and Sikkema-Raddatz, Birgit and Sinke, Richard J
Expert Review of Molecular Diagnostics, ISSN 1473-7159, 01/2015, Volume 15, Issue 1, pp. 61 - 70
Next-generation sequencing (NGS) will soon be used for clinically heterogeneous, inherited disorders and the increasing number of disease-causing genes... 
DNA diagnostics | incidental finding | next-generation sequencing | targeted resequencing panel | variant interpretation | Coverage | sequence depth | coverage | EXOME | DILATED CARDIOMYOPATHY | PATHOLOGY | IDENTIFICATION | CANCER | STRATEGIES | INCIDENTAL FINDINGS | MOLECULAR DIAGNOSIS | GENETICS | DISEASE | MUTATIONS | High-Throughput Nucleotide Sequencing - economics | Molecular Diagnostic Techniques - ethics | Humans | Genetic Diseases, Inborn - genetics | Databases, Genetic | Sequence Analysis, DNA - ethics | Genetic Testing - ethics | Molecular Diagnostic Techniques - economics | High-Throughput Nucleotide Sequencing - ethics | Sensitivity and Specificity | Genetic Testing - economics | Sequence Analysis, DNA - economics | Genetic Diseases, Inborn - diagnosis
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10. Full Text Legal approaches regarding health-care decisions involving minors: Implications for next-generation sequencing
by Sénécal, Karine and Thys, Kristof and Vears, Danya F and Van Assche, Kristof and Knoppers, Bartha M and Borry, Pascal
European Journal of Human Genetics, ISSN 1018-4813, 11/2016, Volume 24, Issue 11, pp. 1559 - 1564
The development of next-generation sequencing (NGS) technologies are revolutionizing medical practice, facilitating more accurate, sophisticated and... 
TEST CHILDREN | EXOME | INTERESTS | RECOMMENDATIONS | ADOLESCENTS | BIOCHEMISTRY & MOLECULAR BIOLOGY | GENETICS & HEREDITY | ONSET GENETIC-DISEASES | CLINICIAN | GENOMIC INCIDENTAL FINDINGS | CHALLENGES | AUTONOMY | Adolescence | Pediatrics | Genetic disorders | Disease | Decision making | Genomics | Families & family life | Licenses | Bioethics | Genomes | Genetic screening | Consent | Genetics | Children | Index Medicus
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11. Full Text Research participants in NGS studies want to know about incidental findings
by Jelsig, Anne Marie and Qvist, Niels and Brusgaard, Klaus and Ousager, Lilian Bomme
European Journal of Human Genetics, ISSN 1018-4813, 10/2015, Volume 23, Issue 10, pp. 1423 - 1426
Following the implementation of high-throughput sequencing legal and ethical issues are discussed intensively. The management of incidental findings (IFs) in a... 
ACMG RECOMMENDATIONS | RETURN | GENOMICS | DISCLOSURE | BIOCHEMISTRY & MOLECULAR BIOLOGY | GENETICS & HEREDITY | CLINSEQ | GENETIC RESEARCH | CLINICAL EXOME | CHALLENGES | Biomedical Research - ethics | Humans | Middle Aged | Incidental Findings | Male | High-Throughput Nucleotide Sequencing - ethics | Young Adult | Adolescent | Aged, 80 and over | Adult | Biomedical Research - methods | Disclosure - ethics | Female | Aged | Genetic Variation - genetics | High-Throughput Nucleotide Sequencing - methods | Studies | Ethics | Hospitals | Researchers | Surveillance | Genomics | Genetic research | Systematic review | Genomes | Patients | Polyps | Index Medicus | Short Report
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12. Full Text Exploring neurologists' perspectives on the return of next generation sequencing results to their patients: a needed step in the development of guidelines
by Thierry, H and Groisman, IJ and Godard, B
BMC MEDICAL ETHICS, ISSN 1472-6939, 09/2018, Volume 19, Issue 1, pp. 81 - 81
Background: The use of Next Generation Sequencing such as Whole Genome Sequencing (WGS) is a promising step towards a better understanding and treatment of... 
PERSONAL UTILITY | EXOME | Recontacting patients | SOCIAL SCIENCES, BIOMEDICAL | Incidental findings | MEDICAL ETHICS | Whole Genome Sequencing | VIEWS | Clinical utility | Ethics | DISEASES | ASSOCIATION | Neurological disorders | Neurology - ethics | Humans | Male | Nervous System Diseases - genetics | Nervous System Diseases - diagnosis | High-Throughput Nucleotide Sequencing - ethics | Canada | Social Responsibility | Adult | Disclosure - ethics | Female | Surveys and Questionnaires | Disclosure - standards | Genome, Human | Neurology - statistics & numerical data | Child | Practice Guidelines as Topic | Practice guidelines (Medicine) | Evaluation | Technology application | Genome-wide association studies | Neurologists | Methods | Disease prevention | Genetic counseling | Precision medicine | Epilepsy | Genomics | Genes | Genomes | Research | Mutation | Patients | Index Medicus | Bioethics
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13. Toward greater understanding of patient decision-making around genome sequencing
by Hull, Leland E and Vassy, Jason L
Personalized Medicine, ISSN 1741-0541, 01/2018, Volume 15, Issue 1, pp. 57 - 66
In the era of next-generation sequencing, it is essential to collect and understand the patient outcomes that result from this new technology. One critical... 
genome sequencing | genomics | decision-making | risk-benefit analysis | research | WHOLE-GENOME | PATIENTS VIEWS | INDIVIDUALIZED MEDICINE | RANDOMIZED-TRIAL | INCIDENTAL FINDINGS | RETURN | INFORMED-CONSENT | PHARMACOLOGY & PHARMACY | HEALTH-CARE | AFRICAN-AMERICANS | CLINICAL EXOME | Genome - ethics | Decision Making - ethics | Risk Assessment | Humans | Chromosome Mapping - ethics | Incidental Findings | Sequence Analysis, DNA - ethics | Informed Consent - ethics | Health Knowledge, Attitudes, Practice | Whole Genome Sequencing - ethics | High-Throughput Nucleotide Sequencing - ethics | Health care | Pediatrics | Genetic Information Nondiscrimination Act 2008-US | Decision making | Personal health | Genomics | Socio-economic aspects | Families & family life | Genomes | Research | Patients | Gene sequencing | Ethics | Next-generation sequencing | New technology | Health disparities
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14. Sequencing babies?
by Jordan, B
M S-MEDECINE SCIENCES, ISSN 0767-0974, 10/2015, Volume 31, Issue 10, pp. 929 - 932
An extension of newborn screening to genome sequencing is now feasible but raises a number of scientific, organisational and ethical issues. This is being... 
STATEMENT | MEDICINE, RESEARCH & EXPERIMENTAL | NEWBORN SCREENING-PROGRAMS | High-Throughput Nucleotide Sequencing - economics | DNA Mutational Analysis - economics | Genome-Wide Association Study | DNA Mutational Analysis - ethics | United States | Europe | Humans | Neonatal Screening - ethics | Genetic Testing - ethics | Neonatal Screening - methods | DNA Mutational Analysis - methods | Dried Blood Spot Testing - standards | Genetic Testing - methods | High-Throughput Nucleotide Sequencing - ethics | Neonatal Screening - economics | Dried Blood Spot Testing - methods | Dried Blood Spot Testing - economics | Genetic Testing - economics | High-Throughput Nucleotide Sequencing - methods | Infant, Newborn | Practice Guidelines as Topic
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15. Full Text Clinical Interpretation of Variants from Next‐Generation Sequencing: The 2016 Scientific Meeting of the Human Genome Variation Society
by Oetting, William S and Brookes, Anthony J and Béroud, Christophe and Taschner, Peter E
Human Mutation, ISSN 1059-7794, 10/2016, Volume 37, Issue 10, pp. 1110 - 1113
The 2016 scientific meeting of the Human Genome Variation Society (HGVS; http://www.hgvs.org ) was held on the 20th of May in Barcelona, Spain, with the theme... 
GENETICS & HEREDITY | Genetic Variation | Genetic Predisposition to Disease | Humans | Sequence Analysis, DNA - ethics | Genome, Human | Genomics - ethics | High-Throughput Nucleotide Sequencing - ethics | Genomics | Genomes | Society | Index Medicus | Life Sciences | Biochemistry, Molecular Biology | Computer Science | Genetics | Molecular biology | Bioinformatics | Human genetics
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16. Full Text Consenting for current genetic research: is Canadian practice adequate?
by Jaitovich Groisman, Iris and Egalite, Nathalie and Godard, Beatrice
BMC medical ethics, ISSN 1472-6939, 2014, Volume 15, Issue 1, pp. 80 - 80
Background: In order to ensure an adequate and ongoing protection of individuals participating in scientific research, the impacts of new biomedical... 
Recontacting participants | Participants' protection | Brain disorders | Vulnerable populations | Data sharing | Mental health | Genetic research | Informed consent | Institutional review boards | Next generation sequencing | Secondary use | SOCIAL SCIENCES, BIOMEDICAL | MEDICAL ETHICS | INFORMED-CONSENT | BROKEN | PARTICIPANTS | ETHICS | Ethics Committees, Research - standards | Information Dissemination - ethics | Duty to Recontact - ethics | Humans | Brain Diseases - genetics | Informed Consent - ethics | Ethics Committees, Research - ethics | Vulnerable Populations | Ethics, Research | High-Throughput Nucleotide Sequencing - ethics | Canada | Mental Disorders - genetics | Consent Forms - ethics | Consent Forms - standards | Genetic Research - ethics | Ethics Committees, Research - trends | Research Subjects | Medicine, Experimental | Medical research | Brain research | Research | Analysis | Index Medicus | Bioethics
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17. Full Text Personal genomes, participatory genomics and the anonymity-privacy conundrum
by SCARIA, VINOD
Journal of Genetics, ISSN 0022-1333, 12/2014, Volume 93, Issue 3, pp. 917 - 920
Advances in technology have enabled understanding genetic makeup of individuals at a clinical timescale and affordable cost. This has brought about new... 
Life Sciences | personal genome | phenome | Life Sciences, general | Microbial Genetics and Genomics | privacy | anonymity | Evolutionary Biology | Plant Genetics & Genomics | Animal Genetics and Genomics | Anonymity | Privacy | Phenome | Personal genome | DATABASE | GENETICS & HEREDITY | CONSENT | HEALTH-CARE | SCIENCE | MEDICINE | High-Throughput Nucleotide Sequencing - economics | Genome, Human | Humans | High-Throughput Nucleotide Sequencing - ethics | Precision Medicine | Genomics | Studies | Genetics | Genomes | Index Medicus
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18. Is NGS already in clinical use?
by Jordan, B
M S-MEDECINE SCIENCES, ISSN 0767-0974, 12/2011, Volume 27, Issue 12, pp. 1127 - 1130
MEDICINE, RESEARCH & EXPERIMENTAL | High-Throughput Nucleotide Sequencing - economics | High-Throughput Nucleotide Sequencing - utilization | Data Interpretation, Statistical | Genetic Testing - standards | Humans | Sequence Analysis, DNA - ethics | Sequence Analysis, DNA - standards | Genetic Testing - ethics | Neoplasms - diagnosis | High-Throughput Nucleotide Sequencing - ethics | High-Throughput Nucleotide Sequencing - standards | Perinatology - methods | Practice Patterns, Physicians' - trends | Pregnancy | Neoplasms - genetics | Perinatology - trends | Female | Genetic Testing - economics | Genetic Testing - trends | Infant, Newborn | Sequence Analysis, DNA - trends | Quality Control
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19. Full Text Challenges of using next generation sequencing in newborn screening
by Reinstein, Eyal
Genetics research, ISSN 0016-6723, 2015, Volume 97, pp. e21 - e21
Whole-genome and whole-exome sequencing for clinical applications is now an integral part of medical genetics practice. The term newborn screening refers to... 
EXOME | HEALTH | ERA | CLINICAL-APPLICATION | GENETICS & HEREDITY | GENOMIC MEDICINE | High-Throughput Nucleotide Sequencing - economics | Infant Welfare - economics | Humans | Neonatal Screening - ethics | Neonatal Screening - methods | Child Health Services - economics | Genome, Human - genetics | High-Throughput Nucleotide Sequencing - ethics | Exome - genetics | Infant Welfare - psychology | Neonatal Screening - economics | Cost-Benefit Analysis | High-Throughput Nucleotide Sequencing - methods | Infant, Newborn | Metabolites | Genetics | Genomes | Index Medicus
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