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 practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses as well as important areas for further research. METHODS:This paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013 (eight studies selected for inclusion did not report data collection dates). The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews. RESULTS:Key themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general-though conditional-support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised (e.g. relating to confidentiality, individuals' control over their data, uses and abuses of data and potential harms arising) in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data. CONCLUSIONS:Whilst the results indicate widespread (conditional) public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy.
journal_name
BMC Med Ethicsjournal_title
BMC medical ethicsauthors
Aitken M,de St Jorre J,Pagliari C,Jepson R,Cunningham-Burley Sdoi
10.1186/s12910-016-0153-xsubject
Has Abstractpub_date
2016-11-10 00:00:00pages
73issue
1issn
1472-6939pii
10.1186/s12910-016-0153-xjournal_volume
17pub_type
杂志文章,评审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: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: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...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-14-30
更新日期:2013-07-30 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
doi:10.1186/s12910-020-00473-7
更新日期:2020-06-01 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
pub_type: 杂志文章
doi:10.1186/s12910-018-0255-8
更新日期:2018-03-06 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
pub_type: 杂志文章
doi:10.1186/s12910-017-0225-6
更新日期:2017-11-29 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: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: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
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: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: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
pub_type: 杂志文章
doi:10.1186/s12910-019-0386-6
更新日期:2019-07-03 00:00:00
abstract:BACKGROUND:Financial relationships between physicians and industry are extensive and public reporting of industry payments to physicians is now occurring. Our objectives were to describe physician recipients of large total payments from these seven companies, and to examine discrepancies between these payments and conf...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-13-24
更新日期:2012-09-26 00:00:00
abstract:BACKGROUND:A requisite for ethical human subjects research is that participation should be informed and voluntary. Participation during the informed consent process by way of asking questions is an indicator of the extent to which consent is informed. AIMS:The aims of this study were to assess the extent to which pare...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-12-3
更新日期:2011-02-15 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:In most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of 'good death' to policy. Three exemplar populations are frail olde...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/s12910-016-0129-x
更新日期:2016-07-27 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: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: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:Several charters of rights have been issued in Europe to solemnly proclaim the rights of children during their hospital stay. However, notwithstanding such general declarations, the actual implementation of hospitalized children's rights is unclear. The purpose of this study was to understand to which extent...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-015-0021-0
更新日期:2015-05-13 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:Animal models of human diseases are often used in biomedical research in place of human subjects. However, results obtained by animal models may fail to hold true for humans. One way of addressing this problem is to make animal models more similar to humans by placing human tissue into animal models, renderi...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0345-2
更新日期:2019-01-25 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 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
doi:10.1186/1472-6939-7-4
更新日期:2006-04-06 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
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
doi:10.1186/s12910-015-0056-2
更新日期:2015-09-17 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
pub_type: 杂志文章
doi:10.1186/1472-6939-8-3
更新日期:2007-04-10 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 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
pub_type: 杂志文章
doi:10.1186/1472-6939-14-6
更新日期:2013-02-12 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
pub_type: 杂志文章
doi:10.1186/s12910-020-00550-x
更新日期:2020-10-29 00:00:00