Abstract:
BACKGROUND:The individual informed consent model remains critical to the ethical conduct and regulation of research involving human beings. Parental informed consent process in a rural setting of northern Ghana was studied to describe comprehension and retention among parents as part of the evaluation of the existing informed consent process. METHODS:The study involved 270 female parents who gave consent for their children to participate in a prospective cohort study that evaluated immune correlates of protection against childhood malaria in northern Ghana. A semi-structured interview with questions based on the informed consent themes was administered. Parents were interviewed on their comprehension and retention of the process and also on ways to improve upon the existing process. RESULTS:The average parental age was 33.3 years (range 18-62), married women constituted a majority (91.9%), Christians (71.9%), farmers (62.2%) and those with no formal education (53.7%). Only 3% had ever taken part in a research and 54% had at least one relation ever participate in a research. About 90% of parents knew their children were involved in a research study that was not related to medical care, and 66% said the study procedures were thoroughly explained to them. Approximately, 70% recalled the study involved direct benefits compared with 20% for direct risks. The majority (95%) understood study participation was completely voluntary but only 21% recalled they could withdraw from the study without giving reasons. Younger parents had more consistent comprehension than older ones. Maternal reasons for allowing their children to take part in the research were free medical care (36.5%), better medical care (18.8%), general benefits (29.4%), contribution to research in the area (8.8%) and benefit to the community (1.8%). Parental suggestions for improving the consent process included devoting more time for explanations (46.9%), use of the local languages (15.9%) and obtaining consent at home (10.3%). CONCLUSION:Significant but varied comprehension of the informed consent process exists among parents who participate in research activities in northern Ghana and it appears the existing practices are fairly effective in informing research participants in the study area.
journal_name
BMC Med Ethicsjournal_title
BMC medical ethicsauthors
Oduro AR,Aborigo RA,Amugsi D,Anto F,Anyorigiya T,Atuguba F,Hodgson A,Koram KAdoi
10.1186/1472-6939-9-12subject
Has Abstractpub_date
2008-06-19 00:00:00pages
12issn
1472-6939pii
1472-6939-9-12journal_volume
9pub_type
杂志文章abstract:BACKGROUND: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 o...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-15-38
更新日期:2014-05-13 00:00:00
abstract:BACKGROUND:South Africa currently has a pluralistic health care system with separate public and private sectors. It is, however, moving towards a socialised model with the introduction of National Health Insurance. The South African legislative environment has changed recently with the promulgation of the Consumer Prot...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-14-15
更新日期:2013-03-21 00:00:00
abstract:BACKGROUND:Cancer patients are at risk of developing blood clots in their veins - venous thromboembolism (VTE) - which often takes the form of a pulmonary embolism or deep vein thrombosis. The risk increases with advanced disease. Evidence based treatment is low molecular weight heparin (LMWH) by daily subcutaneous inj...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-13-22
更新日期:2012-09-04 00:00:00
abstract:BACKGROUND:The patenting of human genes has been the subject of debate for decades. While China has gradually come to play an important role in the global genomics-based testing and treatment market, little is known about Chinese scholars' perspectives on patent protection for human genes. METHODS:A content analysis o...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0271-8
更新日期:2018-04-24 00:00:00
abstract:BACKGROUND:In todays' super-diverse societies, communication and interaction in clinical encounters are increasingly shaped by linguistic, cultural, social and ethnic complexities. It is crucial to better understand the difficulties patients with migration background and healthcare professionals experience in their sha...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0311-4
更新日期:2018-07-04 00:00:00
abstract:BACKGROUND:This paper explores ethical concerns arising in healthcare integration. We argue that integration is necessary imperative for meeting contemporary and future healthcare challenges, a far stronger evidence base for the conditions of its effectiveness is required. In particular, given the increasing emphasis a...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0386-6
更新日期:2019-07-03 00:00:00
abstract:BACKGROUND:Respect for confidentiality is important to safeguard the well-being of patients and ensure the confidence of society in the doctor-patient relationship. The aim of our study is to examine real situations in which there has been a breach of confidentiality, by means of direct observation in clinical practice...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-016-0136-y
更新日期:2016-09-02 00:00:00
abstract:BACKGROUND:Expanded access is the use of investigational drugs (IDs) outside of clinical trials. Generally it is performed in patients with serious and life-threatening diseases who cannot be treated satisfactorily with authorized drugs. Legal regulations of expanded access to IDs have been introduced among others in t...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00560-9
更新日期:2020-11-18 00:00:00
abstract:BACKGROUND:Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-0460-0
更新日期:2020-05-11 00:00:00
abstract:BACKGROUND:Efforts to improve patients' understanding of their own medical treatments or research in which they are involved are progressing, especially with regard to informed consent procedures. We aimed to design a multisource informed consent procedure that is easily adaptable to both clinical and research applicat...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-14-30
更新日期:2013-07-30 00:00:00
abstract:BACKGROUND:Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and fur...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/s12910-015-0053-5
更新日期:2015-09-09 00:00:00
abstract:BACKGROUND:Plagiarism is considered as serious research misconduct, together with data fabrication and falsification. However, little is known about biomedical researchers' views on plagiarism. Moreover, it has been argued - based on limited empirical evidence - that perceptions of plagiarism depend on cultural and oth...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00473-7
更新日期:2020-06-01 00:00:00
abstract:BACKGROUND:Implementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-015-0072-2
更新日期:2015-11-16 00:00:00
abstract:BACKGROUND:The study examined the knowledge and attitudes to personal genomics testing for complex diseases among Nigerians and identified how the knowledge and attitudes vary with gender, age, religion, education and related factors. METHODS:Data were collected using qualitative method in 2 districts of the Federal C...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-15-34
更新日期:2014-04-27 00:00:00
abstract:BACKGROUND:The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently ini...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0225-6
更新日期:2017-11-29 00:00:00
abstract:BACKGROUND:Large-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development. Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international h...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0359-9
更新日期:2019-03-28 00:00:00
abstract:BACKGROUND:Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research...
journal_title:BMC medical ethics
pub_type: 杂志文章,随机对照试验
doi:10.1186/1472-6939-13-1
更新日期:2012-01-05 00:00:00
abstract::Pediatric biobanking is considered important for generating biomedical knowledge and improving (pediatric) health care. However, the inclusion of children's samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that c...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-016-0142-0
更新日期:2016-10-12 00:00:00
abstract:BACKGROUND:Biobanking is a relatively new concept in Egypt. Building a good relationship with different stakeholders is essential for the social sustainability of biobanks. To establish this relationship, it is necessary to assess the attitude of different groups towards this concept. The objective of this work is to a...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0394-6
更新日期:2019-08-09 00:00:00
abstract:BACKGROUND:Scientific advances have resulted in more complex medical systems, which in turn have led to an increase in the number of patient safety incidents (PSIs). In this environment, the importance of honest disclosure of PSIs is rising, which highlight the need to settle a reliable system. This study aimed to inve...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00546-7
更新日期:2020-10-27 00:00:00
abstract:BACKGROUND:Few studies have examined factors associated with willingness of people living with HIV (PLHIV) to participate in HIV treatment clinical trials in Sub-Saharan Africa. We assessed the factors associated with participation of PLHIV in HIV treatment clinical trials research at a large urban clinical and researc...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00516-z
更新日期:2020-08-24 00:00:00
abstract:BACKGROUND:This debate article explores how smart technologies may create a double-edged sword for patient safety and effective therapeutic relationships. Increasing utilization of health monitoring devices by patients will likely become an important aspect of self-care and preventive medicine. It may also help to enha...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0255-8
更新日期:2018-03-06 00:00:00
abstract:BACKGROUND:A child is a developing person with evolving capacities that include autonomy, mental (decisional) capacity and capacity to assume responsibility. Hence, children are entitled to participatory (autonomy) rights in South Africa as observed in the Children's Act 38 of 2005. According to section 129 of the Act ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-016-0150-0
更新日期:2016-11-02 00:00:00
abstract:BACKGROUND:In August 2017, Chile lifted its complete ban on abortion by permitting abortion in three limited circumstances: 1) to save a woman's life, 2) lethal fetal anomaly, and 3) rape. The new law allows regulated use of conscientious objection (CO) in abortion care, including allowing institutions to register as o...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00484-4
更新日期:2020-05-24 00:00:00
abstract:BACKGROUND:Patient outcome after serious brain injury is highly variable. Following a period of coma, some patients recover while others progress into a vegetative state (unresponsive wakefulness syndrome) or minimally conscious state. In both cases, assessment is difficult and misdiagnosis may be as high as 43%. Recen...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-15-41
更新日期:2014-05-20 00:00:00
abstract:BACKGROUND:The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practice...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/s12910-016-0153-x
更新日期:2016-11-10 00:00:00
abstract:BACKGROUND:There is continued need for enhanced medical ethics education across the United States. In an effort to guide medical ethics education reform, we report the first interprofessional survey of a cohort of graduate medical, nursing and allied health professional students that examined perceived student need for...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00468-4
更新日期:2020-04-08 00:00:00
abstract:BACKGROUND:As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) s...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/1472-6939-12-11
更新日期:2011-06-14 00:00:00
abstract:BACKGROUND:Institutional review boards (IRBs) distinguish health care quality improvement (QI) and health care quality improvement research (QIR) based primarily on the rigor of the methods used and the purported generalizability of the knowledge gained. Neither of these criteria holds up upon scrutiny. Rather, this ap...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/s12910-015-0056-2
更新日期:2015-09-17 00:00:00
abstract:BACKGROUND:When conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations. METHODS:A systematic literature search was cond...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/s12910-016-0139-8
更新日期:2016-10-22 00:00:00