Toward a More General Consent for the Use of Patients' Biological Material and Health Information for Medical Research-The Patient Perspective.

Background: Biological material and health information from patients are valuable for medical research. Under a "broad" consent model, hospital patients in Norway can consent to their biological material and health information being stored in research biobanks and used for "specific, broadly defined research purposes" within a specified medical research area but not for medical research in general. Patients are asked to provide new consent each time researchers wish to use their material in a different medical research area. This study investigated patient representatives' views on having a general consent for medical research without limitation to specific research purposes. We also investigated preferences for the storage of biological samples, the process of consent collection, and factors motivating or hindering consent. Method: An online, anonymous survey was shared with patient representatives from patient advisory councils at hospitals in Norway, who answered the survey on behalf of patients. A total of 157 representatives completed the survey (response rate of 41%). Results: A majority (66.2%) supported general consent for medical research and the use of surplus material for medical research in general (63.7%) without limitation to specific research purposes. A minority (35%) supported the use of surplus material without being informed. Sixty-five percent agreed that biological samples could be stored with no time limitation. Over half (56%) preferred to ask patients to consent prior to a hospital visit, and the majority (70.7%) supported the possibility of choosing between digital or paper consent. Factors motivating consent included the desire to contribute to medical research (89.8%) and faith in scientific progress (24.2%). Main hindrances included the fear that health information may be used for other purposes than research (49%), uncertainty regarding research uses (43.9%), and lack of information (31.8%). Conclusion: A move toward a general consent for medical research may better comply with patients' wishes and maximize research potential.