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 growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research questions as well as prompt re-evaluation of earlier work and a growing number of scholars working in this area now identify themselves as ELSI scholars rather than with a particular discipline. MAIN TEXT:Due to the international and interdisciplinary nature of ELSI research, scholars can often find themselves isolated from disciplinary or regionally situated support structures. We conducted a workshop with Early Career Researchers (ECRs) in Oxford, UK, and this paper discusses some of the particular challenges that were highlighted. While ELSI ECRs may face many of the universal challenges faced by ECRs, we argue that a number of challenges are either unique or exacerbated in the case of ELSI ECRs and discuss some of the reasons as to why this may be the case. We identify some of the most pressing issues for ELSI ECRs as: interdisciplinary angst and expertise, isolation from traditional support structures, limited resources and funding opportunities, and uncertainty regarding how research contributions will be measured. We discuss the potential opportunity to use web 2.0 technologies to transform academic support structures and address some of the challenges faced by ELSI ECRs, by helping to facilitate mentoring and support, access to resources and new accreditation metrics. CONCLUSION:As our field develops it is crucial for the ELSI community to continue looking forward to identify how emerging digital solutions can be used to facilitate the international and interdisciplinary research we perform, and to offer support for those embarking on, progressing through, and transitioning into an ELSI research career.
journal_name
BMC Med Ethicsjournal_title
BMC medical ethicsauthors
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.doi
10.1186/s12910-016-0121-5subject
Has Abstractpub_date
2016-07-08 00:00:00pages
37issue
1issn
1472-6939pii
10.1186/s12910-016-0121-5journal_volume
17pub_type
杂志文章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 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: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: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
更新日期:2013-11-25 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::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: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: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: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: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:How should clinical ethics support services such as clinical ethics committees (CECs) be implemented and evaluated? We argue that both the CEC itself and the implementation of the CEC should be considered as 'complex interventions'. MAIN TEXT:We present a research project involving the implementation of CEC...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00522-1
更新日期:2020-09-01 00:00:00
abstract:BACKGROUND:Family members do not have an official position in the practice of euthanasia and physician assisted suicide (EAS) in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and eth...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0361-2
更新日期:2019-04-05 00:00:00
abstract:BACKGROUND:Clinical Ethics Committees (CECs) are well established at healthcare institutions in resource-rich countries. However, there is limited information on established CECs in resource poor countries, especially in Africa. This study aimed to establish baseline data regarding existing formal CECs in Africa to rai...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00559-2
更新日期:2020-11-18 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:The ethical principle of justice demands that resources be distributed equally and based on evidence. Guidelines regarding forgoing of CPR are unavailable and there is large variance in the reported rates of attempted CPR in in-hospital cardiac arrest. The main objective of this work was to study whether loc...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0439-x
更新日期:2019-12-26 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: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: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: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: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: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: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: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
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: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: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: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: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
更新日期:2020-02-19 00:00:00
abstract:BACKGROUND:Despite the growing recognition for the need to improve the health of prisoners in Canada and the need for health research, there has been little discussion of the ethical issues with regards to health research with prisoners in Canada. The purpose of this paper is to encourage a national conversation about ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0189-6
更新日期:2017-04-27 00:00:00
abstract:BACKGROUND:Differences in perception and potential disagreements between parents and professionals regarding the attitude for resuscitation at the limit of viability are common. This study evaluated in healthcare professionals whether the decision to resuscitate at the limit of viability (intensive care versus comfort ...
journal_title:BMC medical ethics
pub_type: 杂志文章,随机对照试验
doi:10.1186/s12910-019-0413-7
更新日期:2019-10-22 00:00:00