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1. Full Text Privacy in the Genomic Era
by Naveed, Muhammad and Ayday, Erman and Clayton, Ellen W and Fellay, Jacques and Gunter, Carl A and Hubaux, Jean-Pierre and Malin, Bradley A and Wang, Xiaofeng
ACM computing surveys, ISSN 0360-0300, 09/2015, Volume 48, Issue 1, pp. 1 - 44
recreational genomics | security | Genomics privacy | health care | biomedical research | Health care | Biomedical research | Security | Recreational genomics | Computer Science, Theory & Methods | Technology | Computer Science | Science & Technology | Privacy | Safety and security measures | Management | Nucleotide sequencing | Data security | DNA sequencing | Studies | Computer science | Data integrity | Genomics | Genetic testing | Biotechnology industry | Medicine | Forensic engineering | Medical services | Genomes | DNA testing | Public policy | Diseases | Additional Key Words and Phrases: genomics privacy | healthcare
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2. Full Text Balancing Expediency and Scientific Rigor in Severe Acute Respiratory Syndrome Coronavirus 2 Vaccine Development
by Graepel, Kevin W and Kochhar, Sonali and Clayton, Ellen W and Edwards, Kathryn E
The Journal of infectious diseases, ISSN 0022-1899, 06/2020, Volume 222, Issue 2, pp. 180 - 182
Infectious Diseases | Immunology | Life Sciences & Biomedicine | Microbiology | Science & Technology | Antibodies, Viral - biosynthesis | Coronavirus Infections - prevention & control | Immunogenicity, Vaccine | Antibody-Dependent Enhancement | Humans | Pandemics - prevention & control | Clinical Trials as Topic | Viral Vaccines - adverse effects | Coronavirus Infections - immunology | Pneumonia, Viral - immunology | Betacoronavirus - immunology | COVID-19 | Antibodies, Neutralizing - immunology | SARS-CoV-2 | Animals | Antibodies, Neutralizing - biosynthesis | Pneumonia, Viral - prevention & control | COVID-19 Vaccines | Antibodies, Viral - immunology | Viral Vaccines - immunology | Severe acute respiratory syndrome coronavirus 2 | Medical research | Coronaviruses | Vaccines | Medical ethics | Index Medicus | Abridged Index Medicus
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3. Full Text Disclosure of Genetic Risk Revealed in a Research Study
by Castellanos, Angela and Phimister, Elizabeth G and Stefánsson, Kári and Clayton, Ellen W
The New England journal of medicine, ISSN 0028-4793, 02/2020, Volume 382, Issue 8, pp. 763 - 765
Medicine, General & Internal | Life Sciences & Biomedicine | General & Internal Medicine | Science & Technology | Duty to Warn | Ethics Committees, Research | Humans | Databases, Genetic | Data Anonymization | Confidentiality - ethics | Genes, BRCA2 | Disclosure - ethics | Female | Heterozygote | Genes, BRCA1 | Mutation | Research Subjects | Access control | Medical research | Genomic libraries | Genetic susceptibility | Human genome | Gene mutations | Data libraries | Medicine, Experimental | Research | Health aspects | Ethical aspects | Disclosure of information | Genetic research | Disclosure | Medical ethics | Risk factors | Index Medicus | Abridged Index Medicus
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4. 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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5. Full Text Protecting Life While Preserving Liberty: Ethical Recommendations for Suicide Prevention With Artificial Intelligence
by McKernan, Lindsey C and Clayton, Ellen W and Walsh, Colin G
Frontiers in psychiatry, ISSN 1664-0640, 12/2018, Volume 9, pp. 650 - 650
Life Sciences & Biomedicine | Psychiatry | Science & Technology | Prevention | Usage | Analysis | Health risk assessment | Suicide | Artificial intelligence | Statistics | ethics | code of ethics | machine learning | artificial intelligence | suicide
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6. Full Text Two large‐scale surveys on community attitudes toward an opt‐out biobank
by Brothers, Kyle B and Morrison, Daniel R and Clayton, Ellen W
American journal of medical genetics. Part A, ISSN 1552-4825, 12/2011, Volume 155, Issue 12, pp. 2982 - 2990
research ethics | biorepository research | patient perspectives | Patient perspectives | Biorepository research | Research ethics | Life Sciences & Biomedicine | Genetics & Heredity | Science & Technology | Biological and medical sciences | Medical genetics | Medical sciences | Academies and Institutes - ethics | Public Opinion | Humans | Middle Aged | Male | Genetic Testing - ethics | Biological Specimen Banks - standards | Trust | Young Adult | Adolescent | Aged, 80 and over | Adult | Female | Interviews as Topic | Aged | Genetic Research - ethics | Biological Specimen Banks - ethics | genomics | Models | Internet | Index Medicus
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7. 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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8. Full Text Practical Guidance on Informed Consent for Pediatric Participants in a Biorepository
by Brothers, Kyle B., MD and Lynch, John A., PhD and Aufox, Sharon A., MS and Connolly, John J., PhD and Gelb, Bruce D., MD and Holm, Ingrid A., MD, PhD and Sanderson, Saskia C., PhD and McCormick, Jennifer B., PhD and Williams, Janet L., LGC, MS and Wolf, Wendy A., PhD and Antommaria, Armand H.M., MD, PhD and Clayton, Ellen W., MD, JD
Mayo Clinic proceedings, ISSN 0025-6196, 2014, Volume 89, Issue 11, pp. 1471 - 1480
Internal Medicine | Medicine, General & Internal | Life Sciences & Biomedicine | General & Internal Medicine | Science & Technology | Biological Specimen Banks - organization & administration | Guidelines as Topic | United States | Humans | National Human Genome Research Institute (U.S.) - standards | Informed Consent - ethics | Biological Specimen Banks - standards | Child Welfare - ethics | Adolescent | Genetic Research - ethics | Parental Consent - ethics | Biological Specimen Banks - ethics | Child | Specimen Handling - ethics | Practice guidelines (Medicine) | Pediatrics | Informed consent (Medical law) | Analysis | Standards | Index Medicus | Abridged Index Medicus
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9. Full Text Patients' willingness to reconsider cancer genetic testing after initially declining: Mention it again
by Halverson, Colin M. E and Wessinger, Bronson C and Clayton, Ellen W and Wiesner, Georgia L
Journal of genetic counseling, ISSN 1059-7700, 02/2020, Volume 29, Issue 1, pp. 18 - 24
genetic counseling | barriers to genetic testing | decision‐making | genetic testing | hereditary cancer | psychosocial | ethics | decision-making | Social Sciences | Life Sciences & Biomedicine | Social Sciences, Biomedical | Health Care Sciences & Services | Health Policy & Services | Genetics & Heredity | Biomedical Social Sciences | Science & Technology | Diagnostic testing | At risk | Medical diagnosis | Patients | Genetic screening | Refusal | Genetic counseling | Psychological distress | Counseling | Diagnosis | Genetic counselling | Psychosocial factors | Cancer | Index Medicus
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10. Full Text Response to Patryn and Zagaja
by Garrison, Nanibaa A and Clayton, Ellen W and Smith, Maureen E and Holm, Ingrid A
Genetics in medicine, ISSN 1098-3600, 07/2016, Volume 18, Issue 7, pp. 751 - 751
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11. Full Text Patient perspectives on variant reclassification after cancer susceptibility testing
by Halverson, Colin M. E and Connors, Laurie M and Wessinger, Bronson C and Clayton, Ellen W and Wiesner, Georgia L
Molecular genetics & genomic medicine, ISSN 2324-9269, 07/2020, Volume 8, Issue 7, pp. e1275 - n/a
recontact | genetics | ethics | uncertainty | reclassification | Life Sciences & Biomedicine | Genetics & Heredity | Science & Technology | Studies | Web portals | Researchers | Testing laboratories | Genetics | Patients | Low level | Reclassification | Interviews | Genetic screening | Cancer | Index Medicus
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12. Full Text What Results Should Be Returned from Opportunistic Screening in Translational Research?
by Halverson, Colin M. E and Jones, Sarah H and Novak, Laurie and Simpson, Christopher and Edwards, Digna R. Velez and Zhao, Sifang Kathy and Clayton, Ellen W
Journal of personalized medicine, ISSN 2075-4426, 03/2020, Volume 10, Issue 1, p. 13
Health Care Sciences & Services | Medicine, General & Internal | Life Sciences & Biomedicine | General & Internal Medicine | Science & Technology | return of results | clinical utility | genetic testing | personal utility | genomic testing
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13. Full Text A systematic literature review of individuals' perspectives on privacy and genetic information in the United States
by Clayton, Ellen W and Halverson, Colin M and Sathe, Nila A and Malin, Bradley A
PloS one, ISSN 1932-6203, 10/2018, Volume 13, Issue 10, pp. e0204417 - e0204417
Science & Technology - Other Topics | Multidisciplinary Sciences | Science & Technology | Genetic research | Public opinion | Privacy | Genetic Information Nondiscrimination Act 2008-US | Trustworthiness | Criminal investigations | Genomics | Systematic review | Security | Genetic screening | Human subjects | Literature reviews | Medicine | Americans with Disabilities Act 1990-US | Consent | Confidentiality | Information sharing | Genetics | Public health | Index Medicus
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