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 applications, and to evaluate its effectiveness in terms of understanding and awareness, even in less educated patients. METHODS:We designed a multisource informed consent procedure for patients' enrolment in a Cancer Institute Biobank (CRO-Biobank). From October 2009 to July 2011, a total of 550 cancer patients admitted to the Centro di Riferimento Oncologico IRCCS Aviano, who agreed to contribute to its biobank, were consecutively enrolled. Participants were asked to answer a self-administered questionnaire aim at exploring their understanding of biobanks and their needs for information on this topic, before and after study participation. Chi-square tests were performed on the questionnaire answers, according to gender or education. RESULTS:Of the 430 patients who returned the questionnaire, only 36.5% knew what a biobank was before participating in the study. Patients with less formal education were less informed by some sources (the Internet, newspapers, magazines, and our Institute). The final assessment test, taken after the multisource informed consent procedure, showed more than 95% correct answers. The information received was judged to be very or fairly understandable in almost all cases. More than 95% of patients were aware of participating in a biobank project, and gave helping cancer research (67.5%), moral obligation, and supporting cancer care as main reasons for their involvement. CONCLUSIONS:Our multisource informed consent information system allowed a high rate of understanding and awareness of study participation, even among less-educated participants, and could be an effective and easy-to-apply model for others to consider to contribute to a well-informed decision making process in several fields, from clinical practice to research.Further studies are needed to explore the effects on the study comprehension by each source of information, and by other sources suggested by participants in the questionnaire.
journal_name
BMC Med Ethicsjournal_title
BMC medical ethicsauthors
Cervo S,Rovina J,Talamini R,Perin T,Canzonieri V,De Paoli P,Steffan Adoi
10.1186/1472-6939-14-30subject
Has Abstractpub_date
2013-07-30 00:00:00pages
30issn
1472-6939pii
1472-6939-14-30journal_volume
14pub_type
杂志文章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: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: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: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:There is a permanent need to evaluate and develop the ethical quality of scientific research and to widen knowledge about the effects of ethical issues. Therefore we evaluated whether informed consent is related to implementation and success in a lifestyle intervention study with older research participants....
journal_title:BMC medical ethics
pub_type: 杂志文章,随机对照试验
doi:10.1186/1472-6939-11-9
更新日期:2010-06-08 00:00:00
abstract:BACKGROUND:Various forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics support. In the Netherlands, a CES quality assessment project based on a responsive evaluation design...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0418-2
更新日期:2019-11-01 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
doi:10.1186/s12910-020-0448-9
更新日期:2020-01-21 00:00:00
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
更新日期:2009-06-18 00:00:00
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 ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0284-3
更新日期:2018-06-15 00:00:00
abstract:BACKGROUND:DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible man...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0300-7
更新日期:2018-06-19 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:When a new intervention or drug is developed, this has to pass through various phases of clinical testing before it achieves market approval, which can take many years. This raises an issue for drugs which could benefit terminally ill patients. These patients might set their hopes on the experimental drug bu...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-016-0145-x
更新日期:2016-10-18 00:00:00
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
更新日期:2017-12-04 00:00:00
abstract:BACKGROUND:France has long been a country of immigration and in some respects may be seen to have a generous policy with respect to asylum seekers and access to health care for migrants. The French state notably provides healthcare access for undocumented migrants, through state medical aid and since 1998 has had a hum...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00500-7
更新日期:2020-07-13 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: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: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
更新日期:2009-10-09 00:00:00
abstract::The 3rd Pan-African Ethics Human Rights and Medical Law (3rd EHRML) conference was held in Johannesburg on July 7, 2013, as part of the Africa Health Congress. The conference brought together bioethicists, researchers and scholars from South Africa, Zimbabwe, Kenya and Nigeria working in the field of bioethics as well...
journal_title:BMC medical ethics
pub_type:
doi:10.1186/1472-6939-14-S1-S1
更新日期:2013-01-01 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:Community engagement (CE) models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still show very limited contribution of the community to the engagement process. One way of achieving this is...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0236-3
更新日期:2017-12-13 00:00:00
abstract:BACKGROUND:Public satisfaction with policy process influences the legitimacy and acceptance of policies, and conditions the future political process, especially when contending ethical value judgments are involved. On the other hand, public involvement is required if effective policy is to be developed and accepted. M...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-6-1
更新日期:2005-01-20 00:00:00
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
更新日期:2016-07-08 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: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 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
更新日期:2017-12-22 00:00:00
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
更新日期:2017-12-07 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: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: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: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