Abstract
BackgroundLack of proper understanding on the part of researchers about public understanding of research and informed consent will increase the potential for malpractice. As a part of a larger study on ethics and informed consent in Sri Lanka, this study aimed to ascertain the level of understanding of 'research' by exploring the views of the public and professionals.MethodsConvenience sampling and snow ball technique were used for recruitment with an emphasis on balanced age and gender representation, diverse educational, socio-cultural and professional backgrounds, and previous research experience, either as researchers or participants. Content analysis of the data was carried out.Results66 persons (37 males, 29 females) participated. Although fundamentally a qualitative study, themes were also quantitatively analysed for informative results. Most participants thought that the word 'research' meant searching, looking, inquiring while some others thought it meant gathering information, gaining knowledge and learning.A third of participants did not offer an alternative word for research. Others suggested the words survey, exploration, search, experiment, discovery, invention and study as being synonymous. Doctors, health professionals, health institutions, scientists, professionals, businessmen, pharmaceutical companies, students, teachers were identified as people who conduct research.Participants indicated that crucial information on deciding to participate in research included objectives of the research, project importance and relevance, potential benefits to individuals and society, credibility & legitimacy of researchers, what is expected of participant, reason for selection, expected outcome, confidentiality and ability to withdraw at any time. A majority (89%) expressed their willingness to participate in future research.ConclusionsThe results show that with or without prior experience in research, participants in this study had a reasonable understanding of research. The findings show that a decision about taking part in research is dependent on knowledge, education and also on social networks.The results demonstrate that the majority were supportive of health research and believe that research is beneficial to the welfare of society.
Highlights
Lack of proper understanding on the part of researchers about public understanding of research and informed consent will increase the potential for malpractice
The results show that with or without prior experience in research, participants in this study had a reasonable understanding of research
The proposal was presented to an invited audience in Sri Lanka who were either involved in ethics review process or who had a special interest in ethics, some of whom had received training during an intensive course in bioethics funded by the Wellcome Trust in 2003 [19,20]
Summary
Lack of proper understanding on the part of researchers about public understanding of research and informed consent will increase the potential for malpractice. A considerable gap in research literacy still exists between research participants and investigators [4]. Public understanding of research may vary according to levels of education and literacy, the existence of a research culture and the extent of debate about science and research in the public domain, while the value placed on individual informed consent practices may have cultural variations [2,6,7]. A number of studies have been conducted in African countries investigating the attitudes and understanding of research participation, mainly in malaria treatment and vaccine trials [16]
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