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 Canadian genetic health providers' perspectives on factors and criteria that influence and shape resource allocation decisions for publically funded predictive genetic testing in Canada. METHODS:The authors conducted semi-structured interviews with 16 senior lab directors and clinicians at publically funded Canadian predictive genetic testing facilities. Participants were drawn from British Columbia, Alberta, Manitoba, Ontario, Quebec and Nova Scotia. Given the community sampled was identified as being relatively small and challenging to access, purposive sampling coupled with snowball sampling methodologies were utilized. RESULTS:Surveyed lab directors and clinicians indicated that predictive genetic tests were funded provincially by one of two predominant funding models, but they themselves played a significant role in how these funds were allocated for specific tests and services. They also rated and identified several factors that influenced allocation decisions and patients' decisions regarding testing. Lastly, participants provided recommendations regarding changes to existing allocation models and showed support for a national evaluation process for predictive testing. CONCLUSION:Our findings suggest that largely local and relatively ad hoc decision making processes are being made in relation to resource allocations for predictive genetic tests and that a more coordinated and, potentially, national approach to allocation decisions in this context may be appropriate.
journal_name
BMC Med Ethicsjournal_title
BMC medical ethicsauthors
Adair A,Hyde-Lay R,Einsiedel E,Caulfield Tdoi
10.1186/1472-6939-10-6subject
Has Abstractpub_date
2009-06-18 00:00:00pages
6issn
1472-6939pii
1472-6939-10-6journal_volume
10pub_type
杂志文章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
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abstract:BACKGROUND:In 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment ("liberation therapy") received little more than passing interest in the international scientific and medical communities, hi...
journal_title:BMC medical ethics
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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
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更新日期:2018-07-24 00:00:00
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 i...
journal_title:BMC medical ethics
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更新日期:2008-06-19 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
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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
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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...
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更新日期:2005-01-20 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...
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更新日期:2013-07-30 00:00:00
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
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更新日期:2013-11-25 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
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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...
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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
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更新日期:2015-06-02 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
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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
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更新日期:2018-03-06 00:00:00
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
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更新日期:2006-04-06 00:00:00
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
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更新日期:2020-02-19 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...
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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:The widespread sharing of biologicaConcluding Comments: Teaching Responsible Datal and biomedical data is recognised as a key element in facilitating translation of scientific discoveries into novel clinical applications and services. At the same time, twenty-first century states are increasingly concerned t...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-016-0112-6
更新日期:2016-05-17 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
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journal_title:BMC medical ethics
pub_type: 杂志文章
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更新日期:2017-11-29 00:00:00
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更新日期:2018-04-24 00:00:00
abstract:BACKGROUND:Between 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control ...
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更新日期:2012-09-26 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
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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
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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: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
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更新日期:2020-06-01 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: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: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
更新日期:2018-06-22 00:00:00