BMC Medical Ethics 17 (1):48 (2016)

BackgroundPersonal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research.MethodsA 45-item survey was distributed to a convenience sample of patients at an outpatient clinic in a large urban centre. The survey briefly addressed sociodemographic and illness characteristics. Opinions were sought on the research use of health information and biospecimens including consent preferences.ResultsTwo hundred eleven of 400 distributed surveys were completed. Respondents were generally supportive of medical research and trusting of researchers. Many respondents supported the use of their information and biospecimens for health research and also preferred consent be sought for use of health information and biospecimens. Some supported the use of their information and biospecimens for research without consent. There were significant differences in the opinions people offered regarding the research use of biospecimens compared to health information. Some respondent perspectives about consent were at odds with current regulatory and legal standards.ConclusionsClinical health data and biospecimens are valuable research resources, critical to the advancement of medicine. Use of these data for research requires balancing respect for individual autonomy, privacy and the societal interest in the greater good. Incongruence between some respondent perspectives and the regulatory standards suggest both a need for public education and review of legislation to increase understanding and ensure the public’s trust is maintained.
Keywords No keywords specified (fix it)
Categories (categorize this paper)
DOI 10.1186/s12910-016-0130-4
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy

Upload a copy of this paper     Check publisher's policy     Papers currently archived: 68,908
Through your library

References found in this work BETA

Add more references

Citations of this work BETA

Add more citations

Similar books and articles

Wanted: Human Biospecimens.Karen J. Maschke - 2010 - Hastings Center Report 40 (5):21-23.
Conscience, Courage, and “Consent”.Mark A. Hall & Nancy M. P. King - 2016 - Hastings Center Report 46 (2):30-32.
Waving Goodbye to Waivers of Consent.Jeffrey R. Botkin - 2015 - Hastings Center Report 45 (6):inside back cover-inside back co.
Biobank Research and the Right to Privacy.Lars Øystein Ursin - 2008 - Theoretical Medicine and Bioethics 29 (4):267-285.


Added to PP index

Total views
7 ( #1,063,088 of 2,497,754 )

Recent downloads (6 months)
2 ( #283,405 of 2,497,754 )

How can I increase my downloads?


My notes