Literature DB >> 18840249

Research on medical records without informed consent.

Franklin G Miller1.   

Abstract

Observational research involving access to personally identifiable data in medical records has often been conducted without informed consent, owing to practical barriers to soliciting consent and concerns about selection bias. Nevertheless, medical records research without informed consent appears to conflict with basic ethical norms relating to clinical research and personal privacy. This article analyzes the scope of these norms and provides an ethical justification for research using personally identifiable medical information without consent.

Mesh:

Year:  2008        PMID: 18840249     DOI: 10.1111/j.1748-720X.2008.304.x

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  17 in total

1.  [Research and protection of personal data in Primary Care].

Authors:  Sofía Garrido Elustondo; Luisa Cabello Ballesteros; Inés Galende Domínguez; Rosario Riesgo Fuertes; Ricardo Rodríguez Barrientos; Elena Polentinos Castro
Journal:  Aten Primaria       Date:  2011-07-29       Impact factor: 1.137

Review 2.  Understanding the global epidemiology of pediatric critical illness: the power, pitfalls, and practicalities of point prevalence studies.

Authors:  Scott L Weiss; Julie C Fitzgerald; Edward Vincent Faustino; Marino S Festa; Ericka L Fink; Philippe Jouvet; Jenny L Bush; Niranjan Kissoon; John Marshall; Vinay M Nadkarni; Neal J Thomas
Journal:  Pediatr Crit Care Med       Date:  2014-09       Impact factor: 3.624

3.  Ethical Implications of Clinical Genomic Information, Records Research, and Informed Consent.

Authors:  Susannah W Lee
Journal:  Ochsner J       Date:  2018

4.  Managing patient expectations about deidentification.

Authors:  Shawneequa L Callier; Harald Schmidt
Journal:  Am J Bioeth       Date:  2010-09       Impact factor: 11.229

5.  Ethics and Phishing Experiments.

Authors:  David B Resnik; Peter R Finn
Journal:  Sci Eng Ethics       Date:  2017-08-15       Impact factor: 3.525

6.  Sharing medical data for health research: the early personal health record experience.

Authors:  Elissa R Weitzman; Liljana Kaci; Kenneth D Mandl
Journal:  J Med Internet Res       Date:  2010-05-25       Impact factor: 5.428

7.  Power to the People: Data Citizens in the Age of Precision Medicine.

Authors:  Barbara J Evans
Journal:  Vanderbilt J Entertain Technol Law       Date:  2017

8.  Who Owns the Data in a Medical Information Commons?

Authors:  Amy L McGuire; Jessica Roberts; Sean Aas; Barbara J Evans
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

Review 9.  "Let's get the best quality research we can": public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study.

Authors:  Elizabeth M Hill; Emma L Turner; Richard M Martin; Jenny L Donovan
Journal:  BMC Med Res Methodol       Date:  2013-06-04       Impact factor: 4.615

10.  Observational research with adolescents: a framework for the management of the parental permission.

Authors:  Miguel Ruiz-Canela; Cristina Lopez-del Burgo; Silvia Carlos; Maria Calatrava; Carlos Beltramo; Alfonso Osorio; Jokin de Irala
Journal:  BMC Med Ethics       Date:  2013-01-03       Impact factor: 2.652

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