Legal and ethical framework for global health information and biospecimen exchange - an international perspective.

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: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: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: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

authors： Fiscella K,Tobin JN,Carroll JK,He H,Ogedegbe G

更新日期：2015-09-17 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 use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently ini...

journal_title：BMC medical ethics

authors： Heathfield LJ,Maistry S,Martin LJ,Ramesar R,de Vries J

更新日期：2017-11-29 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

authors： Yoshida A,Dowa Y,Murakami H,Kosugi S

更新日期：2013-11-25 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 ...

journal_title：BMC medical ethics

authors： Alirol E,Kuesel AC,Guraiib MM,de la Fuente-Núñez V,Saxena A,Gomes MF

更新日期：2017-06-26 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

authors： Abi Tayeh G,Jouannic JM,Mansour F,Kesrouani A,Attieh E

更新日期：2018-05-02 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:Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research...

journal_title：BMC medical ethics

authors： Bravo G,Arcand M,Blanchette D,Boire-Lavigne AM,Dubois MF,Guay M,Hottin P,Lane J,Lauzon J,Bellemare S

更新日期：2012-01-05 00:00:00

abstract：BACKGROUND:Expanded access is the use of investigational drugs (IDs) outside of clinical trials. Generally it is performed in patients with serious and life-threatening diseases who cannot be treated satisfactorily with authorized drugs. Legal regulations of expanded access to IDs have been introduced among others in t...

journal_title：BMC medical ethics

authors： Borysowski J,Górski A

更新日期：2020-11-18 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: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: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

authors： Knerr S,Ceballos RM

更新日期：2015-07-17 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

authors： Weijer C,Peterson A,Webster F,Graham M,Cruse D,Fernández-Espejo D,Gofton T,Gonzalez-Lara LE,Lazosky A,Naci L,Norton L,Speechley K,Young B,Owen AM

更新日期：2014-05-20 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: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

authors： Ganya W,Kling S,Moodley K

更新日期：2016-11-02 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

authors： Würth K,Langewitz W,Reiter-Theil S,Schuster S

更新日期：2018-07-04 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

authors： Fitzpatrick EF,Martiniuk AL,D'Antoine H,Oscar J,Carter M,Elliott EJ

更新日期：2016-10-22 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: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

authors： Willison DJ,Ondrusek N,Dawson A,Emerson C,Ferris LE,Saginur R,Sampson H,Upshur R

更新日期：2014-08-08 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

authors： Van Baarle EM,Potma MC,van Hoek MEC,Hartman LA,Molewijk BAC,van Gurp JLP

更新日期：2019-11-01 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: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

authors： Papadimitriou V,Tosello B,Pfister R

更新日期：2019-10-22 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: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

authors： Sebatta DE,Siu G,Nabeta HW,Anguzu G,Walimbwa S,Lamorde M,Bukenya B,Kambugu A

更新日期：2020-08-24 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

authors： Martineau JT,Minyaoui A,Boivin A

更新日期：2020-05-11 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

authors： Abdelhafiz AS,Sultan EA,Ziady HH,Ahmed E,Khairy WA,Sayed DM,Zaki R,Fouda MA,Labib RM

更新日期：2019-08-09 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