Structural racism in precision medicine: leaving no one behind.

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

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

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

authors： Behrens KG

更新日期：2020-10-29 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

authors： Kalkman S,Mostert M,Gerlinger C,van Delden JJM,van Thiel GJMW

更新日期：2019-03-28 00:00:00

abstract：BACKGROUND:Scientific advances have resulted in more complex medical systems, which in turn have led to an increase in the number of patient safety incidents (PSIs). In this environment, the importance of honest disclosure of PSIs is rising, which highlight the need to settle a reliable system. This study aimed to inve...

journal_title：BMC medical ethics

authors： Kim Y,Lee E

更新日期：2020-10-27 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

authors： Musesengwa R,Chimbari MJ

更新日期：2017-12-13 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

authors： Alpinar-Sencan Z,Schicktanz S

更新日期：2020-05-11 00:00:00

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 fur...

journal_title：BMC medical ethics

authors： D'Abramo F,Schildmann J,Vollmann J

更新日期：2015-09-09 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

authors： Magelssen M,Karlsen H,Pedersen R,Thoresen L

更新日期：2020-09-01 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

authors： Fagbemiro L,Adebamowo C

更新日期：2014-04-27 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

authors： Silva DS,Matheson FI,Lavery JV

更新日期：2017-04-27 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

authors： Chima SC,Mduluza T,Kipkemboi J

更新日期：2013-01-01 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

authors： Bernasconi L,Şen S,Angerame L,Balyegisawa AP,Hong Yew Hui D,Hotter M,Hsu CY,Ito T,Jörger F,Krassnitzer W,Phillips AT,Li R,Stockley L,Tay F,von Heijne Widlund C,Wan M,Wong C,Yau H,Hiemstra TF,Uresin Y,Senti G

更新日期：2020-01-21 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

authors： Rowe K,Moodley K

更新日期：2013-03-21 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

authors： Bezuidenhout LM,Morrison M

更新日期：2016-05-17 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

authors： McKeown A,Cliffe C,Arora A,Griffin A

更新日期：2019-07-03 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

authors： Stol YH,Asscher ECA,Schermer MHN

更新日期：2018-06-22 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

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

更新日期：2016-10-12 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

authors： DeFoor MT,Chung Y,Zadinsky JK,Dowling J,Sams RW 2nd

更新日期：2020-04-08 00:00:00

abstract：BACKGROUND:Donepezil, an acetylcholinesterase inhibitor used in the treatment of Alzheimer's disease, has been widely cited in media and bioethics literature on cognitive enhancement (CE) as having the potential to improve the cognitive ability of healthy individuals. In both literatures, this claim has been repeatedly...

journal_title：BMC medical ethics

authors： Wade L,Forlini C,Racine E

更新日期：2014-05-12 00:00:00

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

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

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

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

更新日期：2009-06-18 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

authors： Länsimies-Antikainen H,Pietilä AM,Laitinen T,Kiviniemi V,Rauramaa R

更新日期：2010-06-08 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

authors： Auray-Blais C,Patenaude J

更新日期：2006-04-06 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

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

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

authors： Mamhidir AG,Kihlgren M,Sorlie V

更新日期：2007-04-10 00:00:00

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

authors： Ho A,Quick O

更新日期：2018-03-06 00:00:00

abstract：BACKGROUND:Implementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised...

journal_title：BMC medical ethics

authors： Goodyear-Smith F,Jackson C,Greenhalgh T

更新日期：2015-11-16 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

authors： Al-Qadire MM,Hammami MM,Abdulhameed HM,Al Gaai EA

更新日期：2010-10-18 00:00:00

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

authors： Pullman D,Zarzeczny A,Picard A

更新日期：2013-02-12 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

authors： Moodley K,Kabanda SM,Soldaat L,Kleinsmidt A,Obasa AE,Kling S

更新日期：2020-11-18 00:00:00