Studies on informed consent to medical research conducted in low or middle-income settings have increased, including empirical investigations of consent to genetic research. We investigated voluntary participation and comprehension of informed consent among women involved in a genetic epidemiological study on breast cancer in an urban setting of Nigeria comparing women in the case and control groups.
Background Interest in biobanking for collection of specimens for non-communicable diseases research has grown in recent times. This paper explores the perspectives of Nigerians on donation of specimen for the biobanking research. Methods We conducted 16 Focus Group Discussions (FGD) with individuals from different ethnic, age and socio-economic groups in Kano (North), Enugu (Southeast), Oyo States (Southwest) and Abuja, the Federal Capital Territory (Central) of Nigeria. We used topic guides and prompt statements to explore the knowledge and understanding of interviewees (...) to general issues about biobanking of biospecimens, their use and specifically about role of biobanking in non-communicable diseases research. Results A total of 123 individuals participated in 16 focus group discussions in 2011. Our participants had limited knowledge of the concept of biobanking but accepted it once they were educated about it and saw it as a worthwhile venture. Half of our study participants supported use of broad consent, a quarter supported restricted consent while the remaining quarter were in favour of tiered consent. Most discussants support shipment of their samples to other countries for further research, but they prefer those collaborations to be done only with competent, ethical researchers and they would like to receive feedback about such projects. The majority preferred health care as a benefit from participation, particularly for any unexpected condition that may be discovered during the course of the research instead of financial compensation. Participants emphasized the need to ensure that donated samples were not used for research that contradicts their religious beliefs. Conclusions Our study demonstrates that our participants accepted biobanking once they understand it but there were different attitudes to elements of biobanking such as type of consent. Our study highlights the need to carefully document population attitudes to elements of modern scientific research and the consenting process. (shrink)
Background With growth of genomics research in Africa, concern has arisen about comprehension and adequacy of informed consent given the highly technical terms used in this field. We therefore decided to study whether there are linguistic and cultural concepts used to communicate heritability of characters, traits and diseases in an indigenous African population. Methods We conducted Focus Group Discussions among 115 participants stratified by sex, age and socio-economic status and Key Informant Interviews among 25 stakeholders and Key Opinion Leaders among (...) Yoruba living in Ibadan, Nigeria. We used Atlas-ti v.8.3.17 software to analyze the data, using thematic approach. Results The study participants identified several linguistic and cultural concepts including words, proverbs, and aphorisms that are used to describe heritable characters, traits and diseases in their local dialect. These included words that can be appropriated to describe dominant and recessive traits, variations in penetrance and dilution of strength of heritable characteristics by time and inter-marriage. They also suggested that these traits are transmitted by “blood”, and specific partner’s blood may be stronger than the other regardless of sex. Conclusions Indigenous Yoruba populations have words and linguistic concepts that describe the heritability of characters, traits and diseases which can be appropriated to improve comprehension and adequacy of informed consent in genomics research. Our methods are openly available and can be used by genomic researchers in other African communities. (shrink)
In Nigeria, medical education remains focused on the traditional clinical and basic medical science components, leaving students to develop moral attitudes passively through observation and intuition. In order to ascertain the adequacy of this method of moral formations, we studied the opinions of medical students in a Nigerian university towards medical ethics training. Self administered semi-structured questionnaires were completed by final year medical students of the College of Medicine, University of Ibadan, Nigeria. There were 82 (64.1%) male and 44 (34.4%) (...) female respondents. The median age was 26 years. Most students (80.5%) responded that they did not receive enough training in medical ethics. The ethics instructions they received did not sufficiently prepare them for the ethical challenges they came across as medical students. Though inadequate, the few hours of lecture and discussion on human values and professional etiquette which they received positively influenced their moral reasoning. They identified end-of-life issues, dealing with financial issues and handling socio-cultural beliefs of patients and relations as some challenges that medical doctors are ill-prepared for by their current training. Most, 85.9% believed that formal medical ethics education would be worthwhile as it would enhance the making of complete and better doctors. They recommended incorporating bioethics as a course in the medical school curriculum. Nigerian medical students encounter ethical challenges for which they have not been adequately trained to resolve. They recommended formal medical ethics training in their curriculum and a uniform bioethics programme in the country. (shrink)