Public support and consent preference for biomedical research and biobanking in Jordan

Abstract

The success of any biobank depends on a number of factors including public's view of research and the extent to which it is willing to participate in research. As a prototype of surrounding countries, public interest in research and biobanking in addition to the influence and type of informed consent for biobanking were investigated in Jordan. Data were collected as part of a national survey of 3196 individuals representing the Jordanian population. The majority of respondents (88.6%) had a positive perception of the level of research in Jordan and they overwhelmingly (98.2%) agreed to the concept of investing as a country in research. When respondents were asked if the presence of an informed consent would influence their decision to participate in biobanking, more individuals (19.8%) considered having an informed consent mechanism as a positive factor than those who considered it to have negative connotations (13.1%). However, a substantial portion (65%) did not feel it affected their decision. The majority of survey participants (64%) expressed willingness to participate in biobanking and over 90% of them preferred an opt-in consent form whether general (75.2%) or specific for disease or treatment (16.9%). These results indicate a promising ground for research and biobanking in Jordan. Educational programs or mass awareness campaigns to promote participation in biobanking and increase awareness about informed consent and individual rights in research will benefit both the scientific community as well as the public.

Use of human surplus biospecimens in research: a survey from a cancer centre

“…they were satisfied with a general opt-in consent. Interestingly; these views were similar to what was reported by Ahram et al in Jordan, in which 90% of the general population preferred an opt-in type of consent, more commonly of a general (75.2%) rather than a specific (16.9%) type (14). This gives credibility to our study since, although our sample was smaller and addressed the views of patients only, the conclusions were similar in both studies.…”

“…In a study from Morocco, inconsistencies were found between laboratories in obtaining informed consent from patients when using their samples in research (13). More recently Ahram et al explored the attitude of a large cohort (> 3000) of Jordanians towards biobanks, a concept which was positively accepted by a majority of respondents (14).…”

Towards establishing a multiple sclerosis biobank in Jordan

“…This outcome is in parallel to the high level of support for research in Jordan [13] and the trust people have toward scientists and physicians in the country. It is worth mentioning that, at the national level, more than two-thirds of participants were not affected by the possibility of recontact and accessing medical files to participate in biobanking and only 10% thought of them having a negative impact [14].…”

“…In previous studies, although a majority of the Jordanian public was willing to donate for biobanking, it was lower than the rate of those approving the use of biospecimens in research and much lower than those who expressed interest in investing in scientific research [12,13]. In addition, a number of factors related to research and biobanking such as religious permission, returning research results and allowed withdrawal, appeared to play an important role in shaping public participation in biobanking and research [14].…”

Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review

“…For example, one study reported that ‘[t]he survey sample was designed according to Department of Statistics guidelines using the 2004 Population and Housing Census to ensure that the final sample reflected the socioeconomic and demographic distribution of Jordan' [33]. …”