Literature DB >> 16053596

When is research on patient records without consent ethical?

Michael Parker1.   

Abstract

Current regulations do not allow most low-risk research using patient records without patient consent. One of the main reasons adduced for this is that such research constitutes an unacceptable breach of confidentiality. By contrast, it is argued in this paper that it may, on occasion, be acceptable for confidentiality to be breached according to all three of the major ethical justifications for respecting patient confidentiality. In practice, the arguments against allowing research using patient records are usually grounded in claims about the link between confidentiality and respect for patient autonomy rather than legitimate patient expectations. Patients may have good reason to expect, or come to expect, that their records will be used without their consent for low-risk research, under certain conditions. Where this is the case, such expectations provide reasonable grounds for considering such research to be ethical.

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Year:  2005        PMID: 16053596     DOI: 10.1258/1355819054338960

Source DB:  PubMed          Journal:  J Health Serv Res Policy        ISSN: 1355-8196


  6 in total

1.  Extracting information from hospital records: what patients think about consent.

Authors:  Bruce Campbell; Helen Thomson; Jessica Slater; Colin Coward; Katrina Wyatt; Kieran Sweeney
Journal:  Qual Saf Health Care       Date:  2007-12

2.  Ethical issues in human genomics research in developing countries.

Authors:  Jantina de Vries; Susan J Bull; Ogobara Doumbo; Muntaser Ibrahim; Odile Mercereau-Puijalon; Dominic Kwiatkowski; Michael Parker
Journal:  BMC Med Ethics       Date:  2011-03-18       Impact factor: 2.652

3.  Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK.

Authors:  Fiona Riordan; Chrysanthi Papoutsi; Julie E Reed; Cicely Marston; Derek Bell; Azeem Majeed
Journal:  Int J Med Inform       Date:  2015-01-20       Impact factor: 4.046

4.  The Importance of Relevance: Willingness to Share eHealth Data for Family Medicine Research.

Authors:  Gillian Bartlett; Brenda Macgibbon; Analia Rubinowicz; Cecilia Nease; Martin Dawes; Robyn Tamblyn
Journal:  Front Public Health       Date:  2018-09-04

5.  Ethical data release in genome-wide association studies in developing countries.

Authors:  Michael Parker; Susan J Bull; Jantina de Vries; Tsiri Agbenyega; Ogobara K Doumbo; Dominic P Kwiatkowski
Journal:  PLoS Med       Date:  2009-11-24       Impact factor: 11.069

6.  When "no" might not quite mean "no"; the importance of informed and meaningful non-consent: results from a survey of individuals refusing participation in a health-related research project.

Authors:  Brian Williams; Linda Irvine; Alison R McGinnis; Marion E T McMurdo; Iain K Crombie
Journal:  BMC Health Serv Res       Date:  2007-04-26       Impact factor: 2.655

  6 in total

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