title: A survey of patient perspectives on the research use of health information and biospecimens.
abstract: Personal 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.
  
  
  
  A 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.
  
  
  
  Two hundred eleven of 400 distributed surveys were completed (response rate 52.8 %). 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.
  
  
  
  Clinical 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.
authors.affiliation: Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, TRW Building, 3rd Floor, 3280 Hospital Drive NW, Calgary, AB, T2N 4Z6, Canada. sapage@ucalgary.ca.|Conjoint Health Research Ethics Board, Research Services, University of Calgary, MacKimmie Library Tower, 3rd Floor, 2500 University Drive NW, Calgary, AB, T2N 1N4, Canada. sapage@ucalgary.ca.
authors.forename: Stacey A
authors.initials: SA
authors.lastname: Page
authors.affiliation: Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, TRW Building, 3rd Floor, 3280 Hospital Drive NW, Calgary, AB, T2N 4Z6, Canada.|Alberta Centre for Child, Family & Community Research, Child Development Centre, 2888 Shaganappi Trail NW, Calgary, AB, T3B-6A8, Canada.
authors.forename: Kiran Pohar
authors.initials: KP
authors.lastname: Manhas
authors.affiliation: Department of Medicine, Division of Nephrology and Hypertension, Snyder Institute for Chronic Diseases, University of Calgary, 3280 Hospital Dr. NW, Calgary, AB, T2N 4Z6, Canada.
authors.forename: Daniel A
authors.initials: DA
authors.lastname: Muruve
mesh_terms: D000328:Adult; D000368:Aged; D001294:Attitude to Health; D035843:Biomedical Research / Q000941:ethics / Q000379:methods; D002477:Cells; D032984:Ethics, Research; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007258:Informed Consent; D008297:Male; D008499:Medical Records; D008875:Middle Aged; D010361:Patients; D026684:Personal Autonomy; D018907:Privacy; D012107:Research Design; D013048:Specimen Handling; D035502:Trust
keywords: Biospecimens; Health information; Informed consent; Privacy; Research ethics; Secondary use