Lindsey Brown1, Michael Parker, Mary Dixon-Woods. 1. The Ethox Centre, Department of Public Health and Primary Care, University of Oxford, Oxford, UK. lindsey.brown@ethox.ox.ac.uk
Abstract
OBJECTIVE: There is increasing debate about the ethics of using medical records for research. We aimed to characterize newspaper reporting in this area. METHOD: We searched Lexis-Nexis to find newspaper reports about the use of medical records for research from 1 June 2005 to 30 November 2006. Following screening for relevance, we generated a coding scheme and classified articles using this, assisted by QSR N6 software. RESULTS: Our analysis shows that much newspaper coverage portrays the use of medical records as uncontentious, but also presents ethical arguments for and against such research. Arguments in favour of access to medical records emphasize the public interest and patients' legitimate expectations that research will be carried out. Arguments against such use emphasize the importance of confidentiality and the violation of rights of privacy. Our findings highlight that there is no single dominant position on the rights and wrongs of access to medical records by researchers. Within newspaper reporting in this area, patient voices are currently noticeable by their absence. CONCLUSIONS: Use of medical records for research raises important ethical questions, in particular regarding the balance between the rights and interests of the individual and the public interest benefits of the research. Understanding how these positions are represented within the mass media is important because the media can inform and influence the public's views and public policy. Empirical research into patient views is needed.
OBJECTIVE: There is increasing debate about the ethics of using medical records for research. We aimed to characterize newspaper reporting in this area. METHOD: We searched Lexis-Nexis to find newspaper reports about the use of medical records for research from 1 June 2005 to 30 November 2006. Following screening for relevance, we generated a coding scheme and classified articles using this, assisted by QSR N6 software. RESULTS: Our analysis shows that much newspaper coverage portrays the use of medical records as uncontentious, but also presents ethical arguments for and against such research. Arguments in favour of access to medical records emphasize the public interest and patients' legitimate expectations that research will be carried out. Arguments against such use emphasize the importance of confidentiality and the violation of rights of privacy. Our findings highlight that there is no single dominant position on the rights and wrongs of access to medical records by researchers. Within newspaper reporting in this area, patient voices are currently noticeable by their absence. CONCLUSIONS: Use of medical records for research raises important ethical questions, in particular regarding the balance between the rights and interests of the individual and the public interest benefits of the research. Understanding how these positions are represented within the mass media is important because the media can inform and influence the public's views and public policy. Empirical research into patient views is needed.