Abstract:
:Current UK legislation is impacting upon the feasibility and cost-effectiveness of medical record-based research aimed at benefiting the NHS and the public heath. Whereas previous commentators have focused on the Data Protection Act 1998, the Health and Social Care Act 2001 is the key legislation for public health researchers wishing to access medical records without written consent. The Act requires researchers to apply to the Patient Information Advisory Group (PIAG) for permission to access medical records without written permission. We present a case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research, and in our case 560,000pound of public and charitable money was spent on research staff while a large part of their work was prohibited until the third year of a three year grant. We conclude by arguing that many of the current problems could be avoided by returning PIAG's responsibilities to research ethics committees, and by allowing "opt-out" consent for many public health research projects.
journal_name
J Med Ethicsjournal_title
Journal of medical ethicsauthors
Metcalfe C,Martin RM,Noble S,Lane JA,Hamdy FC,Neal DE,Donovan JLdoi
10.1136/jme.2006.019661subject
Has Abstractpub_date
2008-01-01 00:00:00pages
37-40issue
1eissn
0306-6800issn
1473-4257pii
34/1/37journal_volume
34pub_type
杂志文章abstract::In the context of military medical care, Eisenstein and colleagues have introduced the notion 'left of bang intervention in trauma', which refers to interventions administered before trauma to reduce morbidity and mortality after injury. This paper responds to Eisenstein and colleagues' ethical analysis of such interv...
journal_title:Journal of medical ethics
pub_type: 评论,杂志文章
doi:10.1136/medethics-2017-104584
更新日期:2018-07-01 00:00:00
abstract::Several distinct arguments conclude that terminally ill patients have a right to a medically assisted death; two are especially influential: the autonomy argument and the non-harm argument. Both have proven convincing to many, but not to those who view the duty not to kill as an (almost) absolute constraint. Some phil...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2016-103575
更新日期:2017-06-01 00:00:00
abstract::A fetus may survive an intentional interference with its intrauterine environment (1) if gestational age is mistaken and the procedure of induced abortion does not kill the fetus, (2) if a change of heart takes place after abortifacient drugs are taken and the abortion does not proceed, and (3) if a high-multiple preg...
journal_title:Journal of medical ethics
pub_type: 杂志文章,评审
doi:10.1136/jme.16.2.61
更新日期:1990-06-01 00:00:00
abstract::Dual-track assessment directs research ethics committees (RECs) to assess the risks of research interventions based on the unclear distinction between therapeutic and non-therapeutic interventions. The net risks test, in contrast, relies on the clinically familiar method of assessing the risks and benefits of interven...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2005.014043
更新日期:2007-08-01 00:00:00
abstract::Discussions on the ethics and regulation of clinical research have a great deal to say about the responsibilities of investigators, sponsors, research institutions and institutional review boards, but very little about the responsibilities of research participants. In this article, we discuss the responsibilities of p...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2011-100319
更新日期:2012-12-01 00:00:00
abstract::This paper explores whether donor-parents felt coerced to donate a kidney to their child. There is a paucity of UK literature on parental live kidney donors and the voluntariness of their decision-making. Data were gathered as part of a study exploring parental experiences of consenting for live donation at a UK speci...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2013-101988
更新日期:2015-04-01 00:00:00
abstract::The Belgian model of 'integral' end-of-life care consists of universal access to palliative care (PC) and legally regulated euthanasia. As a first worldwide, the Flemish PC organisation has embedded euthanasia in its practice. However, some critics have declared the Belgian-model concepts of 'integral PC' and 'palliat...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2016-103511
更新日期:2017-08-01 00:00:00
abstract::This article discusses what level of consent is needed from a child or parent before a primary-school medical can take place (i.e. where children are aged under 12). It also considers whether there are occasions when a doctor can see a child if the parents have failed to give consent or have explicitly refused consent...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.26.6.469
更新日期:2000-12-01 00:00:00
abstract::Some disability rights advocates criticise prenatal testing and selective abortion on the grounds that these practices express negative attitudes towards existing persons with disabilities. Disability rights advocates also commonly criticise and oppose physician-assisted suicide (PAS) and euthanasia on the same ground...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2019-105875
更新日期:2020-08-01 00:00:00
abstract:OBJECTIVES:The objective of this research is to analyse the evolution and nature of published empirical research in the fields of medical ethics and bioethics. DESIGN:Retrospective quantitative study of nine peer reviewed journals in the field of bioethics and medical ethics (Bioethics, Cambridge Quarterly of Healthca...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2004.011478
更新日期:2006-04-01 00:00:00
abstract::Direct-to-consumer (DTC) genetic services have generated enormous controversy from their first emergence. A dramatic recent manifestation of this is the Food and Drug Administration's (FDA) cease and desist order against 23andMe, the leading provider in the market. Critics have argued for the restrictive regulation of...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2014-102026
更新日期:2015-04-01 00:00:00
abstract::Dr. Bernstein suggests that anti-vivisectionists should be able to fill in a directive requesting that they receive no medical treatment developed through work on animals. It is replied that this would only be reasonable if research not using animals had long been funded as adequately and its results were currently av...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.22.5.302
更新日期:1996-10-01 00:00:00
abstract::In their paper 'The "serious" factor in germline modification', Kleiderman, Ravitsky and Knoppers rightly highlight the ambiguity in the oft-utilised term 'serious' in legal discussions of human germline genome modification.1 They suggest interpretation of this term may benefit from a framework based on human rights r...
journal_title:Journal of medical ethics
pub_type: 评论,杂志文章
doi:10.1136/medethics-2019-105764
更新日期:2020-02-01 00:00:00
abstract::Many healthcare goods, such as surgical instruments, textiles and gloves, are manufactured in unregulated factories and sweatshops where, amongst other labour rights violations, workers are subject to considerable occupational health risks. In this paper we undertake an ethical analysis of the supply of sweatshop-prod...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2020-106286
更新日期:2020-08-24 00:00:00
abstract::Antimicrobial therapy is a cornerstone of therapy in critically ill patients; however, the wide use of antibiotics has resulted in increased antimicrobial resistance and outbreaks of resistant disease. To counter this, many hospitals have instituted antimicrobial stewardship programmes as a way to reduce the inappropr...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2015-102785
更新日期:2017-10-01 00:00:00
abstract::Nigel Biggar (2015) argues that religion deserves a place in secular medicine. Biggar suggests we abandon the standard rationalistic conception of the secular realm and see it rather as "a forum for the negotiation of rival reasonings". Religious reasoning is one among a number of ways of thinking that must vie for ac...
journal_title:Journal of medical ethics
pub_type: 评论,杂志文章
doi:10.1136/medethics-2015-102805
更新日期:2015-11-01 00:00:00
abstract::Students at Newcastle are exposed to patients during their first week at medical school and attached to a family within the first month. The object is to sensitise them to patients as people rather than vehicles of disease. Medical ethics is introduced as part of the multidisciplinary Human Development, Behaviour and ...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.11.1.35
更新日期:1985-03-01 00:00:00
abstract::Why do we persist in the relentless pursuit of artificial nourishment and other treatments to maintain a permanently unconscious existence? In facing the future, if not the present world-wide reality of a huge number of persistent vegetative state (PVS) patients, will they be treated because of our ethical commitment ...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.19.2.71
更新日期:1993-06-01 00:00:00
abstract::This paper investigates the medical law and ethics (MEL) learning needs of Foundation doctors (FYs) by means of a national survey developed in association with key stakeholders including the General Medical Council and Health Education England. Four hundred sevnty-nine doctors completed the survey. The average self-re...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2019-105961
更新日期:2020-04-10 00:00:00
abstract::Perimortem gamete retrieval has been a possibility for several decades. It involves the surgical extraction of gametes which can then be cryo-preserved and stored for future use. Usually, the request for perimortem gamete retrieval is made by the patient's partner after the patient himself, or herself, has lost the ca...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2013-101727
更新日期:2015-06-01 00:00:00
abstract:BACKGROUND:Patient autonomy has gradually replaced physician paternalism as an ethical ideal. However, in a medical context, the principle of individual autonomy has different meanings. More knowledge is needed about what is and should be an appropriate understanding of the concept of patient autonomy in clinical pract...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.24.6.394
更新日期:1998-12-01 00:00:00
abstract::Non-therapeutic circumcision violates boys' right to bodily integrity as well as to self-determination. There is neither any verifiable medical advantage connected with the intervention nor is it painless nor without significant risks. Possible negative consequences for the psychosexual development of circumcised boys...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2012-101284
更新日期:2013-07-01 00:00:00
abstract::Too many people now have access to confidential medical information. Patients are becoming justifiably wary and the doctor-patient relationship is deteriorating. We can avert the developing crisis by allowing patients to keep their own medical records at home. This will ensure that confidentiality is respected and tha...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.10.1.27
更新日期:1984-03-01 00:00:00
abstract::A National Committee for the Ethics of Research could consider new questions arising from innovations in research or practice, deal with multi-centre trials, adjudicate when separate local committees give conflicting advice about similar projects, or oversee the work of district committees. The value of each of these ...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.16.3.146
更新日期:1990-09-01 00:00:00
abstract:BACKGROUND:The importance of respecting patients and participants in clinical research is widely recognised. However, what it means to respect persons beyond recognising them as autonomous is unclear, and little is known about what patients find to be respectful. OBJECTIVE:To understand patients' conceptions of respec...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2008.027235
更新日期:2009-07-01 00:00:00
abstract::The practice of covertly administering medication is controversial. Although condemned by some as overly paternalistic, others have suggested that it may be acceptable if patients have permanent mental incapacity and refuse needed treatment. Ethical, legal, and clinical considerations become more complex when the ment...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2003.007336
更新日期:2005-05-01 00:00:00
abstract::This paper summarises the features of my paper, 'Voluntary Active Euthanasia', and a later jointly authored paper, 'Moral Fictions', which I believe are examples of good medical ethics. ...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2014-102293
更新日期:2015-01-01 00:00:00
abstract::The advent of prenatal genetic diagnosis has sparked debates among ethicists and philosophers regarding parental responsibility towards potential offspring. Some have attempted to place moral obligations on parents to not bring about children with certain diseases in order to prevent harm to such children. There has b...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2010.039230
更新日期:2011-05-01 00:00:00
abstract::Arguments are advanced, on a pragmatic basis, for preferring a 'situational' approach to medical ethical problems, rather than an approach based on any one of the dogmatic formulations on offer. The consequences of such a preference are exemplified in relation to confidentiality; and in relation to the ethical dilemma...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.10.4.179
更新日期:1984-12-01 00:00:00
abstract::Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely uncheck...
journal_title:Journal of medical ethics
pub_type: 杂志文章,评审
doi:10.1136/jme.28.5.313
更新日期:2002-10-01 00:00:00