A Belmont Report for Health Data

Just as indignities common in human-subjects research led to the articulation of ethical principles in the Belmont Report 40 years ago, contemporary concerns about data use call for stakeholders to promulgate ethical guidance for health data.

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Published inThe New England journal of medicine Vol. 380; no. 16; pp. 1493 - 1495
Main Authors Parasidis, Efthimios, Pike, Elizabeth, McGraw, Deven
Format Journal Article
LanguageEnglish
Published United States Massachusetts Medical Society 18.04.2019
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Abstract Just as indignities common in human-subjects research led to the articulation of ethical principles in the Belmont Report 40 years ago, contemporary concerns about data use call for stakeholders to promulgate ethical guidance for health data.
AbstractList Just as indignities common in human-subjects research led to the articulation of ethical principles in the Belmont Report 40 years ago, contemporary concerns about data use call for stakeholders to promulgate ethical guidance for health data.
Author McGraw, Deven
Parasidis, Efthimios
Pike, Elizabeth
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  givenname: Efthimios
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  organization: From the Moritz College of Law and the College of Public Health, Ohio State University, Columbus (E. Parasidis); the Office of the Chief Information Officer, Department of Health and Human Services, Washington, DC (E. Pike); and Ciitizen, Palo Alto, CA (D.M.)
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  givenname: Elizabeth
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  organization: From the Moritz College of Law and the College of Public Health, Ohio State University, Columbus (E. Parasidis); the Office of the Chief Information Officer, Department of Health and Human Services, Washington, DC (E. Pike); and Ciitizen, Palo Alto, CA (D.M.)
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  surname: McGraw
  fullname: McGraw, Deven
  organization: From the Moritz College of Law and the College of Public Health, Ohio State University, Columbus (E. Parasidis); the Office of the Chief Information Officer, Department of Health and Human Services, Washington, DC (E. Pike); and Ciitizen, Palo Alto, CA (D.M.)
BackLink https://www.ncbi.nlm.nih.gov/pubmed/30995370$$D View this record in MEDLINE/PubMed
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Cites_doi 10.1136/amiajnl-2012-001509
10.1001/jama.2018.5630
10.1001/jamainternmed.2013.9166
10.1378/chest.15-0706
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Grande, D, Mitra, N, Shah, A, Wan, F, Asch, DA (r004) 2013; 173
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Grady, C (r005) 2015; 148
Malin, BA, Emam, KE, O’Keefe, CM (r002) 2013; 20
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  start-page: 1148
  year: 2015
  end-page: 1155
  ident: r005
  article-title: Institutional review boards: purpose and challenges.
  publication-title: Chest
– ident: r003
  article-title: Mayer-Schönberger V, Ramge T. A big choice for big tech: share data or suffer the consequences. Foreign Affairs. September/October 2018 ( https://www.foreignaffairs.com/articles/world/2018-08-13/big-choice-big-tech ).
– volume: 20
  start-page: 2
  year: 2013
  end-page: 6
  ident: r002
  article-title: Biomedical data privacy: problems, perspectives, and recent advances.
  publication-title: J Am Med Inform Assoc
– volume: 320
  start-page: 231
  year: 2018
  end-page: 232
  ident: r001
  article-title: HIPAA and protecting health information in the 21st century.
  publication-title: JAMA
– volume: 173
  start-page: 1798
  year: 2013
  end-page: 1806
  ident: r004
  article-title: Public preferences about secondary uses of electronic health information.
  publication-title: JAMA Intern Med
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  doi: 10.1136/amiajnl-2012-001509
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  doi: 10.1001/jamainternmed.2013.9166
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Snippet Just as indignities common in human-subjects research led to the articulation of ethical principles in the Belmont Report 40 years ago, contemporary concerns...
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SubjectTerms Accountability
Biomedical Research - ethics
Confidentiality - ethics
Confidentiality - legislation & jurisprudence
Consent
Data analysis
Data Anonymization - legislation & jurisprudence
Data collection
Datasets as Topic - ethics
Ethics
Ethics, Research
Europe
General Data Protection Regulation
Health Insurance Portability & Accountability Act 1996-US
Health Insurance Portability and Accountability Act
Human Experimentation - ethics
Humans
Insurance premiums
Medical ethics
Personal Autonomy
Privacy
Public health
Review boards
Surveillance
United States
Title A Belmont Report for Health Data
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