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 further stakeholders. However, there is scarcity of literature which connects the normative debate about justifications for different consent models with findings gained in empirical research. In this paper we discuss findings of a limited review of socio-empirical research on patients' and healthy research participants' experiences and views regarding consent to biobank research in light of ethical principles for appropriate information and consent. METHODS:Review question: Which empirical data are available on research participants' perceptions and views regarding information and elicitation of consent for biobank research? Search of articles published till March 1st 2014 in Pubmed. Review of abstracts and potentially relevant full text articles by two authors independently. As categories for content analysis we defined (i) understanding or recall of information, (ii) preferences regarding information or consent, and (iii) research participants' concerns. RESULTS:The search in Pubmed yielded 337 abstracts of which 10 articles were included in this study. Approaches to information and consent varied considerably across the selected studies. The majority of research participants opted for some version of limited consent when being informed about such possibility. Among the factors influencing the type of preferred consent were information about sponsoring of biobank research by pharmaceutical industry and participants' trade-off between privacy and perceived utility. Studies investigating research participants' understanding and recall regarding the consent procedure indicated considerable lack of both aspects. Research participants' perceptions of benefits and harms differ across those studies. CONCLUSION:The knowledge, perceptions and views of research participants who have undergone a consent procedure within the context of biobank research raise several questions on the issue of how to inform and elicit consent in an ethically acceptable way. In our empirical-ethical analysis we develop suggestions on how the practice of eliciting consent in the biobank context should be improved.
journal_name
BMC Med Ethicsjournal_title
BMC medical ethicsauthors
D'Abramo F,Schildmann J,Vollmann Jdoi
10.1186/s12910-015-0053-5subject
Has Abstractpub_date
2015-09-09 00:00:00pages
60issn
1472-6939pii
10.1186/s12910-015-0053-5journal_volume
16pub_type
杂志文章,评审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
更新日期:2011-02-15 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: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
更新日期:2014-01-10 00:00:00
abstract:BACKGROUND:Community consultation is increasingly recommended, and in some cases, required by ethical review boards for research that involves higher levels of ethical risk such as international research and research with vulnerable populations. In designing a randomised control trial of a mental health intervention us...
journal_title:BMC medical ethics
pub_type: 杂志文章,随机对照试验
doi:10.1186/s12910-015-0032-x
更新日期:2015-06-02 00:00:00
abstract:BACKGROUND:The generation of evidence is integral to the work of public health and health service providers. Traditionally, ethics has been addressed differently in research projects, compared with other forms of evidence generation, such as quality improvement, program evaluation, and surveillance, with review of non-...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-15-61
更新日期:2014-08-08 00:00:00
abstract:BACKGROUND:Making particular use of Shale's analysis, this paper discusses the notion of leadership in the context of palliative medicine. Whilst offering a critical perspective, I build on the philosophy of palliative care offered by Randall and Downie and suggest that the normative structure of this medical specialit...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0296-z
更新日期:2018-06-05 00:00:00
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
更新日期:2017-11-03 00:00:00
abstract:BACKGROUND:Few empirical studies have been found that explore ethical challenges among persons in high public positions that are responsible for elder care. The aim of this paper was to illuminate the meaning of being in ethically difficult situations related to elder care as experienced by high level decision-makers. ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-8-3
更新日期:2007-04-10 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:In most socialised health systems there are formal processes that manage resource scarcity and determine the allocation of funds to health services in accordance with their priority. In this analysis, part of a larger qualitative study examining the ethical issues entailed in doctors' participation as techni...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0314-1
更新日期:2018-07-24 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: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:Consenting for retrospective medical records-based research (MR) and leftover tissue-based research (TR) continues to be controversial. Our objective was to survey Saudis attending outpatient clinics at a tertiary care hospital on their personal preference and perceptions of norm and current practice in rela...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-11-18
更新日期:2010-10-18 00:00:00
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
更新日期:2010-03-09 00:00:00
abstract:BACKGROUND:Evidence concerning how Japanese physicians think and behave in specific clinical situations that involve withholding or withdrawal of medical interventions for end-of-life or frail elderly patients is yet insufficient. METHODS:To analyze decisions and actions concerning the withholding/withdrawal of life-s...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-8-7
更新日期:2007-06-19 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:Several charters of rights have been issued in Europe to solemnly proclaim the rights of children during their hospital stay. However, notwithstanding such general declarations, the actual implementation of hospitalized children's rights is unclear. The purpose of this study was to understand to which extent...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-015-0021-0
更新日期:2015-05-13 00:00:00
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
更新日期:2017-02-28 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:Expectations of receiving personal health information as a fringe benefit of biospecimen donation-termed diagnostic misconception-are increasingly documented. We developed an instrument measuring conflation of observational biospecimen-based research and clinical care for use with Latino communities, who may...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-015-0041-9
更新日期:2015-07-17 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:Intensive care physicians often must rely on substitute decision makers to address all dimensions of the construct of "best interest" for incapable, critically ill patients. This task involves identifying prior wishes and to facilitate the substitute decision maker's understanding of the incapable patient's ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-11-1
更新日期:2010-02-10 00:00:00
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
更新日期:2018-06-08 00:00:00
abstract:BACKGROUND:The progress of electronic health technologies and biobanks holds enormous promise for efficient research. Evidence shows that studies based on sharing and secondary use of data/samples have the potential to significantly advance medical knowledge. However, sharing of such resources for international collabo...
journal_title:BMC medical ethics
pub_type: 杂志文章
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更新日期:2020-01-21 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:We analyzed the patients' perception of prenatal diagnosis of fetal cardiac pathology, and the reasons for choosing to continue with pregnancy despite being eligible to receive a medical termination of pregnancy. We also identified the challenges, the motives interfering in decision-making, and the consequen...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0270-9
更新日期:2018-05-02 00:00:00
abstract:BACKGROUND:Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving g...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00476-4
更新日期:2020-05-11 00:00:00
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: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: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
更新日期:2004-10-04 00:00:00