Abstract:
:While an ethical obligation to report findings of clinical research to trial participants is increasingly recognised, the academic debate is often vague about what kinds of data should be fed back and how such a process should be organised. In this article, we present a classification of different actors, processes and data involved in the feedback of research results pertaining to an individual. In a second step, we reflect on circumstances requiring further ethical consideration. In regard to a concrete research setting--the one of clinico-genomic research--we discuss what kinds of difficulties have to be faced when returning individual research results to trial participants. In a last step, we elaborate on a stepwise model to trigger the individual feedback process. Hence, this paper gives guidance on how to feedback individual research results in a specific research setting and responds at the same time to new challenges in the debate on the duty to return individual research findings.
journal_name
J Med Ethicsjournal_title
Journal of medical ethicsauthors
Kollek R,Petersen Idoi
10.1136/jme.2009.034041subject
Has Abstractpub_date
2011-05-01 00:00:00pages
271-5issue
5eissn
0306-6800issn
1473-4257pii
jme.2009.034041journal_volume
37pub_type
杂志文章abstract::Understanding dental ethics as a field separate from its much better known counterpart, medical ethics, is a relatively new, but necessary approach in bioethics. This need is particularly felt in dental education and establishing a curriculum specifically for dental ethics is a challenging task. Although certain topic...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2011-100067
更新日期:2012-01-01 00:00:00
abstract:BACKGROUND:More and more quantitative information is becoming available about the risks of complications arising from medical treatment. In everyday practice, this raises the question whether each and every risk, however low, should be disclosed to patients. What could be good reasons for doing or not doing so? This wi...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2005.014936
更新日期:2007-02-01 00:00:00
abstract::The public often believes that parents have a right to make medical decisions about their child. The idea that, in respect of children, doctors should do what parents tell them to do is problematic on the face of it. The effect of such a claim would be that a doctor who acted deliberately to harm a child would be maki...
journal_title:Journal of medical ethics
pub_type: 杂志文章,评审
doi:10.1136/medethics-2017-104705
更新日期:2018-07-01 00:00:00
abstract::The passing on of information to GPs by genito-urinary doctors is to be encouraged but is not always possible and ultimately the patient's wishes and confidentiality must be respected if sexually transmitted diseases and HIV infection are to be controlled. Infected health-care workers should seek counselling and medic...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.17.4.196
更新日期:1991-12-01 00:00:00
abstract::In 2016, the Office of the State Coroner of New South Wales released its report into the death of an Australian woman, Sheila Drysdale, who had died from complications of an autologous stem cell procedure at a Sydney clinic. In this report, we argue that Mrs Drysdale's death was avoidable, and it was the result of a p...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2016-104046
更新日期:2017-11-01 00:00:00
abstract::Towers reviews Joan Robinson: One Woman's Story, an American documentary film about a terminal cancer patient that was first broadcast by the Public Broadcasting Service on 21 January 1980. The film was made at the instigation of Robinson, a writer and editor, and covers the last twenty-two months of her life from th...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.6.2.101
更新日期:1980-06-01 00:00:00
abstract::Codes of medical ethics issued by professional organizations typically contain statements affirming the importance of confidentiality between patients and health-care practitioners. Seldom, however, is the confidentiality obligation depicted as absolute. Instead, exceptions are noted, the most common of which is that ...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.20.1.47
更新日期:1994-03-01 00:00:00
abstract::This essay is the text of the first Ian Ramsey Memorial Lecture delivered by the author at Oxford University in December 1986. Ramsey, Bishop of Durham from 1966 until his death in 1972, was a philosopher whose interests were contemporary ethical issues created by the interaction of law, medicine, and religion. Duns...
journal_title:Journal of medical ethics
pub_type: 传,历史文章,杂志文章
doi:10.1136/jme.13.4.189
更新日期:1987-12-01 00:00:00
abstract::Over the decades of experimentation on the placebo effect, it has become clear that it is driven largely by expectation, and that strong expectations of efficacy are more likely to give rise to the experience of benefit. No wonder the placebo effect has come to resemble a self-fulfilling prophecy. However, this resemb...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2012-101057
更新日期:2013-04-01 00:00:00
abstract::Currently, any dentist in the UK who is HIV-seropositive must stop treating patients. This is despite the fact that hepatitis B-infected dentists with a low viral load can continue to practise, and the fact that HIV is 100 times less infectious than hepatitis B. Dentists are obliged to treat HIV-positive patients, but...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2007.021972
更新日期:2008-03-01 00:00:00
abstract::Among bioethicists and members of the public, genetics is often regarded as unique in its ethical challenges. As medical researchers and clinicians increasingly combine genetic information with a range of non-genetic information in the study and clinical management of patients with common diseases, the unique ethical ...
journal_title:Journal of medical ethics
pub_type: 杂志文章,评审
doi:10.1136/jme.2005.013532
更新日期:2006-11-01 00:00:00
abstract::I sketch a libertarian argument for the right to test in the context of 'direct to consumer' (DTC) genetic testing. A libertarian right to genetic tests, as defined here, relies on the idea of a moral right to self-ownership. I show how a libertarian right to test can be inferred from this general libertarian premise,...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2015-102827
更新日期:2016-09-01 00:00:00
abstract::The International Bioethics Committee (IBC) of the United Nations Educational, Scientific and Cultural Organisation (UNESCO) is currently drafting a Universal Bioethics Declaration ("the declaration"). The content and even the name of the declaration has yet to be finalized, but it is expected to range widely over hum...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2004.006502
更新日期:2005-03-01 00:00:00
abstract::In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination ...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.25.2.144
更新日期:1999-04-01 00:00:00
abstract::A negative image of community care prevails. This method of care is perceived to be a relatively novel phenomenon and has received mixed media coverage. The negative image of community care has led to the growing belief that this care method has failed. This failure has largely been ascribed to the lack of powers avai...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.24.5.336
更新日期:1998-10-01 00:00:00
abstract:INTRODUCTION:Future HIV vaccine efficacy trials with adolescents will need to ensure that participants comprehend study concepts in order to confer true informed assent. A Hepatitis B vaccine trial with adolescents offers valuable opportunity to test youth understanding of vaccine trial requirements in general. METHOD...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2012-101286
更新日期:2013-06-01 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 work performed by the clinical chemist may deeply affect the decisions of the doctor and the well-being of the patient. Yet in contrast to the doctor and to the nurse the clinical chemist usually has no personal relationship with the patient. Being encumbered by much technology and anonymity is itself a reason for...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.9.4.207
更新日期:1983-12-01 00:00:00
abstract:OBJECTIVES:To evaluate the UK undergraduate medical ethics curricula against the Institute of Medical Ethics (IME) recommendations; to identify barriers to teaching and assessment of medical ethics and to evaluate perceptions of ethics faculties on the preparation of tomorrow's doctors for clinical practice. DESIGN:Qu...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2015-103189
更新日期:2017-09-01 00:00:00
abstract::In a recent article, Udo Schuklenk and Suzanne van de Vathorst argued in favour of a legal option of physician-assisted death for patients with 'treatment-resistant' depression. In this commentary, I contend that their argument neglects the important consideration of the professional integrity of physicians. In light ...
journal_title:Journal of medical ethics
pub_type: 评论,杂志文章
doi:10.1136/medethics-2015-103060
更新日期:2015-11-01 00:00:00
abstract::This article tackles the current deficit in the supply of cadaveric organs by addressing the family veto in organ donation. The authors believe that the family veto matters-ethically as well as practically-and that policies that completely disregard the views of the family in this decision are likely to be counterprod...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2009.032912
更新日期:2010-03-01 00:00:00
abstract:BACKGROUND:Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. OBJECTIVE:To investigate patients' preference for information about a small risk of a complication of colonoscopy, and w...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2008.025031
更新日期:2009-05-01 00:00:00
abstract:BACKGROUND:To prevent the planet from catastrophic global warming a reduction of greenhouse gas emissions to net zero is required. Thus, divestment from fossil fuels must be a strategic interest for health insurers. The aim of this study was to analyse the implementation of environmental, social and governance (ESG) cr...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2020-106381
更新日期:2020-10-13 00:00:00
abstract::A successful feature of the 4th-year curriculum in the Medical Faculty of the Queen's University, Belfast has been the development of interdisciplinary teaching in a three-week joint course to which several clinical departments contribute...Co-ordinated teaching of topics of common interest in small groups included, u...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:
更新日期:1988-09-01 00:00:00
abstract::In this article, we discuss the ethical dimensions for the prescribing behaviours of opioids for a chronic pain patient, a scenario commonly witnessed by many physicians. The opioid epidemic in the USA and Canada is well known, existing since the late 1990s, and individuals are suffering and dying as a result of the e...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/medethics-2018-105099
更新日期:2019-04-01 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::This essay seeks to characterise the essential features of an equitable health care system in terms of the classical Aristotelian concepts of horizontal and vertical equity, the common (but ill-defined) language of "need" and the economic notion of cost-effectiveness as a prelude to identifying some of the more import...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.27.4.275
更新日期:2001-08-01 00:00:00
abstract::The recent report of the UK government's Organ Donation Taskforce is in favour of continuing with the current organ donation system rather than changing to an opt-out system where people are assumed to be willing to donate. How did it reach this decision and is it correct? ...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2009.031757
更新日期:2010-09-01 00:00:00
abstract::The notion of consent which rose to the forefront in biomedical ethics as an attempt to safeguard patients' autonomy, is relatively new. The notion itself requires qualification, for it precludes neither duress nor ignorance. More seriously, I argue here that consent is redundant except in situations where paternalism...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.26.3.183
更新日期:2000-06-01 00:00:00
abstract::Does the position of the Roman Catholic Church on contraception also imply that the usage of condoms by HIV-discordant couples is illicit? A standard argument is to appeal to the doctrine of double effect to condone such usage, but this meets with the objection that there exists an alternative action that brings about...
journal_title:Journal of medical ethics
pub_type: 杂志文章
doi:10.1136/jme.2009.030767
更新日期:2009-12-01 00:00:00