Collection, storage and use of biological samples for future research: a cross-sectional study of opinions of Pietermaritzburg government hospital out-patients.

Abstract

Over the years there has been an increasing interest in the collection, storage and use of human biological samples for current and future research purposes (biomedical research). Human biological samples are defined as any component of the human body or human biological material. They are useful media for research into developing better means of preventing, diagnosing and treating human diseases. Growth in biomedical research has led to increased efforts in developing and revising laws, policies and regulations pertaining to the donation, use and storage of human biological samples. When making these laws, it is necessary to take into consideration the views and attitudes of the public as they are important in informing and guiding legislature which is in line with people’s views, beliefs and needs. This study sought to explore the views of 200 Pietermaritzburg out-patients currently being seen at Grey’s Hospital and Edendale Hospital. Data was obtained through a cross-sectional survey which was analysed quantitatively using SPSS. Results showed that over 50% of participants thought that consent was necessary for research on stored samples whether samples were identifiable or unidentifiable; and whether they were research derived, clinically derived or intended for research studying a disease other than what they were collected for. More than half of the participants thought that consent ought to be obtained when samples were initially collected and that it was the responsibility of the initial clinician or researcher to obtain consent for future research. An equal split was observed between participants who felt that one-time general consent was sufficient and those who thought it was necessary to impose limits to the use of their samples. Most participants wanted to be informed about clinically significant results and they wanted their doctors to be informed too. Participants regarded medical information as most sensitive and most likely to be misused. They regarded all types of medical information as important.