Differences and structural weaknesses of institutional mechanisms for health research ethics: Burkina Faso, Palestine, Peru, and Democratic Republic of the Congo.

Abstract:

BACKGROUND:Regardless of national contexts, the institutions responsible for research ethics, founded on international regulations, are all expected to be structured and to operate in a common way. Our experience with several countries on different continents, however, has raised questions in this regard. This article examines the differences and structural weaknesses of ethics committees in four countries (Burkina Faso, Palestine, Peru, and the Democratic Republic of the Congo) where we have conducted the same socio-anthropological study in the field of reproductive health. METHODS:In addition to recording our observations during field surveys for this study, we performed a documentary review and interviewed expert members of ethics committees, research participants, and researchers who had experience with requesting ethics approvals for research protocols in the field of social sciences and health. RESULTS:The results of this study showed that, despite having the same mandate, the committees functioned differently, while they all exhibited the same weaknesses. Thus, the universalization and standardization of institutional conditions for applying ethical standards in research still present problems that are, at the very least, relevant. CONCLUSION:This study on ethics committees in four countries demonstrated the profound influence of context on the ways in which different institutions function and enforce regulations. In effect, in all social fields, every innovation is infused by its context.

journal_name

BMC Med Ethics

journal_title

BMC medical ethics

authors

Sambiéni NE

doi

10.1186/s12910-018-0284-3

subject

Has Abstract

pub_date

2018-06-15 00:00:00

pages

47

issue

Suppl 1

issn

1472-6939

pii

10.1186/s12910-018-0284-3

journal_volume

19

pub_type

杂志文章
  • Attitudes towards assisted suicide and euthanasia among care-dependent older adults (50+) in Austria: the role of socio-demographics, religiosity, physical illness, psychological distress, and social isolation.

    abstract:BACKGROUND:Care-dependency constitutes an important issue with regard to the approval of end-of-life decisions, yet attitudes towards assisted suicide and euthanasia are understudied among care-dependent older adults. We assessed attitudes towards assisted suicide and euthanasia and tested empirical correlates, includi...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-017-0233-6

    authors: Stolz E,Mayerl H,Gasser-Steiner P,Freidl W

    更新日期:2017-12-07 00:00:00

  • Good health checks according to the general public; expectations and criteria: a focus group study.

    abstract:BACKGROUND:Health checks or health screenings identify (risk factors for) disease in people without a specific medical indication. So far, the perspective of (potential) health check users has remained underexposed in discussions about the ethics and regulation of health checks. METHODS:In 2017, we conducted a qualita...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-018-0301-6

    authors: Stol YH,Asscher ECA,Schermer MHN

    更新日期:2018-06-22 00:00:00

  • Policy recommendations for addressing privacy challenges associated with cell-based research and interventions.

    abstract:BACKGROUND:The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies ...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-15-7

    authors: Ogbogu U,Burningham S,Ollenberger A,Calder K,Du L,El Emam K,Hyde-Lay R,Isasi R,Joly Y,Kerr I,Malin B,McDonald M,Penney S,Piat G,Roy DC,Sugarman J,Vercauteren S,Verhenneman G,West L,Caulfield T

    更新日期:2014-02-03 00:00:00

  • Technology assessment and resource allocation for predictive genetic testing: a study of the perspectives of Canadian genetic health care providers.

    abstract:BACKGROUND:With a growing number of genetic tests becoming available to the health and consumer markets, genetic health care providers in Canada are faced with the challenge of developing robust decision rules or guidelines to allocate a finite number of public resources. The objective of this study was to gain Canadia...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-10-6

    authors: Adair A,Hyde-Lay R,Einsiedel E,Caulfield T

    更新日期:2009-06-18 00:00:00

  • Promoting advance planning for health care and research among older adults: a randomized controlled trial.

    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

    authors: Bravo G,Arcand M,Blanchette D,Boire-Lavigne AM,Dubois MF,Guay M,Hottin P,Lane J,Lauzon J,Bellemare S

    更新日期:2012-01-05 00:00:00

  • The use of empirical research in bioethics: a survey of researchers in twelve European countries.

    abstract:BACKGROUND:The use of empirical research methods in bioethics has been increasing in the last decades. It has resulted in discussions about the 'empirical turn of bioethics' and raised questions related to the value of empirical work for this field, methodological questions about its quality and rigor, and how this int...

    journal_title:BMC medical ethics

    pub_type: 杂志文章,多中心研究

    doi:10.1186/s12910-017-0239-0

    authors: Wangmo T,Provoost V

    更新日期:2017-12-22 00:00:00

  • The emergence of ethical issues in the provision of online sexual health outreach for gay, bisexual, two-spirit and other men who have sex with men: perspectives of online outreach workers.

    abstract:BACKGROUND:Mobile applications and socio-sexual networking websites are used by outreach workers to respond synchronously to questions and provide information, resources, and referrals on sexual health and STI/HIV prevention, testing, and care to gay, bisexual and other men who have sex with men (GB2M). This explorator...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-017-0216-7

    authors: Fantus S,Souleymanov R,Lachowsky NJ,Brennan DJ

    更新日期:2017-11-03 00:00:00

  • Patient-targeted Googling and social media: a cross-sectional study of senior medical students.

    abstract:BACKGROUND:Social media and Internet technologies present several emerging and ill-explored issues for a modern healthcare workforce. One issue is patient-targeted Googling (PTG), which involves a healthcare professional using a social networking site (SNS) or publicly available search engine to find patient informatio...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-017-0230-9

    authors: Chester AN,Walthert SE,Gallagher SJ,Anderson LC,Stitely ML

    更新日期:2017-12-04 00:00:00

  • Seeking consent for research with indigenous communities: a systematic review.

    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

    authors: Fitzpatrick EF,Martiniuk AL,D'Antoine H,Oscar J,Carter M,Elliott EJ

    更新日期:2016-10-22 00:00:00

  • Challenges and opportunities for ELSI early career researchers.

    abstract:BACKGROUND:Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health (NIH) Human Genomic Project budget in 1990 stimulated the gr...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-016-0121-5

    authors: Bell J,Ancillotti M,Coathup V,Coy S,Rigter T,Tatum T,Grewal J,Akcesme FB,Brkić J,Causevic-Ramosevac A,Milovanovic G,Nobile M,Pavlidis C,Finlay T,Kaye J,ELSI2.0.

    更新日期:2016-07-08 00:00:00

  • Knowledge and attitudes to personal genomics testing for complex diseases among Nigerians.

    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

    authors: Fagbemiro L,Adebamowo C

    更新日期:2014-04-27 00:00:00

  • A biobank management model applicable to biomedical research.

    abstract:BACKGROUND:The work of Research Ethics Boards (REBs), especially when involving genetics research and biobanks, has become more challenging with the growth of biotechnology and biomedical research. Some REBs have even rejected research projects where the use of a biobank with coded samples was an integral part of the s...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-7-4

    authors: Auray-Blais C,Patenaude J

    更新日期:2006-04-06 00:00:00

  • Patients' perceived purpose of clinical informed consent: Mill's individual autonomy model is preferred.

    abstract:BACKGROUND:Although informed consent is an integral part of clinical practice, its current doctrine remains mostly a matter of law and mainstream ethics rather than empirical research. There are scarce empirical data on patients' perceived purpose of informed consent, which may include administrative routine/courtesy g...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-15-2

    authors: Hammami MM,Al-Gaai EA,Al-Jawarneh Y,Amer H,Hammami MB,Eissa A,Qadire MA

    更新日期:2014-01-10 00:00:00

  • Patenting human genes: Chinese academic articles' portrayal of gene patents.

    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

    authors: Du L

    更新日期:2018-04-24 00:00:00

  • Microbicides development programme: engaging the community in the standard of care debate in a vaginal microbicide trial in Mwanza, Tanzania.

    abstract:BACKGROUND:HIV prevention research in resource-limited countries is associated with a variety of ethical dilemmas. Key amongst these is the question of what constitutes an appropriate standard of health care (SoC) for participants in HIV prevention trials. This paper describes a community-focused approach to develop a ...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-10-17

    authors: Vallely A,Shagi C,Lees S,Shapiro K,Masanja J,Nikolau L,Kazimoto J,Soteli S,Moffat C,Changalucha J,McCormack S,Hayes RJ

    更新日期:2009-10-09 00:00:00

  • Personalized assent for pediatric biobanks.

    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

    authors: Giesbertz NA,Melham K,Kaye J,van Delden JJ,Bredenoord AL

    更新日期:2016-10-12 00:00:00

  • Personal genome testing: test characteristics to clarify the discourse on ethical, legal and societal issues.

    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

    authors: Bunnik EM,Schermer MH,Janssens AC

    更新日期:2011-06-14 00:00:00

  • Obtaining subjects' consent to publish identifying personal information: current practices and identifying potential issues.

    abstract:BACKGROUND:In studies publishing identifying personal information, obtaining consent is regarded as necessary, as it is impossible to ensure complete anonymity. However, current journal practices around specific points to consider when obtaining consent, the contents of consent forms and how consent forms are managed h...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-14-47

    authors: Yoshida A,Dowa Y,Murakami H,Kosugi S

    更新日期:2013-11-25 00:00:00

  • Identification of ethics committees based on authors' disclosures: cross-sectional study of articles published in the European Journal of Anaesthesiology and a survey of ethics committees.

    abstract:BACKGROUND:Since 2010, the European Journal of Anaesthesiology has required the reporting of five items concerning ethical approval in articles describing human research: ethics committee's name and address, chairperson's name, study's protocol number and approval date. We aimed to assess whether this requirement has h...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-018-0289-y

    authors: Zoccatelli D,Tramèr MR,Elia N

    更新日期:2018-06-08 00:00:00

  • A principled ethical approach to intersex paediatric surgeries.

    abstract:BACKGROUND:Surgery for intersex infants should be delayed until individuals are able to decide for themselves, except where it is a medical necessity. In an ideal world, this single principle would suffice and such surgeries could be totally prohibited. Unfortunately, the world is not perfect, and, in some places, inte...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-020-00550-x

    authors: Behrens KG

    更新日期:2020-10-29 00:00:00

  • Unconventional combinations of prospective parents: ethical challenges faced by IVF providers.

    abstract:BACKGROUND:Professional guidelines have addressed ethical dilemmas posed by a few types of nontraditional procreative arrangements (e.g., gamete donations between family members), but many questions arise regarding how providers view and make decisions about these and other such arrangements. METHODS:Thirty-seven ART ...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-017-0177-x

    authors: Klitzman R

    更新日期:2017-02-28 00:00:00

  • How participatory is parental consent in low literacy rural settings in low income countries? Lessons learned from a community based study of infants in South India.

    abstract:BACKGROUND:A requisite for ethical human subjects research is that participation should be informed and voluntary. Participation during the informed consent process by way of asking questions is an indicator of the extent to which consent is informed. AIMS:The aims of this study were to assess the extent to which pare...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-12-3

    authors: Rajaraman D,Jesuraj N,Geiter L,Bennett S,Grewal HM,Vaz M,TB Trials Study Group.

    更新日期:2011-02-15 00:00:00

  • Convergent ethical issues in HIV/AIDS, tuberculosis and malaria vaccine trials in Africa: Report from the WHO/UNAIDS African AIDS Vaccine Programme's Ethics, Law and Human Rights Collaborating Centre consultation, 10-11 February 2009, Durban, South Africa

    abstract:BACKGROUND:Africa continues to bear a disproportionate share of the global HIV/AIDS, tuberculosis (TB) and malaria burden. The development and distribution of safe, effective and affordable vaccines is critical to reduce these epidemics. However, conducting HIV/AIDS, TB, and/or malaria vaccine trials simultaneously in ...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-11-3

    authors: Mamotte N,Wassenaar D,Koen J,Essack Z

    更新日期:2010-03-09 00:00:00

  • Structural racism in precision medicine: leaving no one behind.

    abstract:BACKGROUND:Precision medicine (PM) is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the most suitable treatment by promoting the sharing of health data and the implementation of learning hea...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-020-0457-8

    authors: Geneviève LD,Martani A,Shaw D,Elger BS,Wangmo T

    更新日期:2020-02-19 00:00:00

  • Ethical oversight in quality improvement and quality improvement research: new approaches to promote a learning health care system.

    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

    authors: Fiscella K,Tobin JN,Carroll JK,He H,Ogedegbe G

    更新日期:2015-09-17 00:00:00

  • Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.

    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

    authors: Martineau JT,Minyaoui A,Boivin A

    更新日期:2020-05-11 00:00:00

  • Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty.

    abstract:BACKGROUND:In most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of 'good death' to policy. Three exemplar populations are frail olde...

    journal_title:BMC medical ethics

    pub_type: 杂志文章,评审

    doi:10.1186/s12910-016-0129-x

    authors: Birchley G,Jones K,Huxtable R,Dixon J,Kitzinger J,Clare L

    更新日期:2016-07-27 00:00:00

  • Under-representation of developing countries in the research literature: ethical issues arising from a survey of five leading medical journals.

    abstract:BACKGROUND:It is widely acknowledged that there is a global divide on health care and health research known as the 10/90 divide. METHODS:A retrospective survey of articles published in the BMJ, Lancet, NEJM, Annals of Internal Medicine & JAMA in a calendar year to examine the contribution of the developing world to me...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-5-5

    authors: Sumathipala A,Siribaddana S,Patel V

    更新日期:2004-10-04 00:00:00

  • International variation in ethics committee requirements: comparisons across five Westernised nations.

    abstract:BACKGROUND:Ethics committees typically apply the common principles of autonomy, nonmaleficence, beneficence and justice to research proposals but with variable weighting and interpretation. This paper reports a comparison of ethical requirements in an international cross-cultural study and discusses their implications....

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-3-2

    authors: Goodyear-Smith F,Lobb B,Davies G,Nachson I,Seelau SM

    更新日期:2002-04-19 00:00:00

  • Characteristics of physicians receiving large payments from pharmaceutical companies and the accuracy of their disclosures in publications: an observational study.

    abstract:BACKGROUND:Financial relationships between physicians and industry are extensive and public reporting of industry payments to physicians is now occurring. Our objectives were to describe physician recipients of large total payments from these seven companies, and to examine discrepancies between these payments and conf...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-13-24

    authors: Norris SL,Holmer HK,Ogden LA,Burda BU,Fu R

    更新日期:2012-09-26 00:00:00