ethical issues
There is a large body of research and writings on the topic of health care research. In primary care research, many of the ethical issues are concerned with:
- Consent
- Privacy and confidentiality
- Quality assurance
- Cultural sensitivity
- Aboriginal and Torres Strait Islander health research
- Conducting clinical trials
- Communicating with patients
- Power relations
- Procedure
Other health-related ethical issues include: stem cell research, organ transplants, assisted reproductive technology, human genetics, etc.
More information on these topics is available on these topics from the National Health and Medical Research Council (NHMRC) website.
guidelines
Ethical conduct in research: National Health & Medical Research Council (NHMRC)
The Australian Health Ethics Committee (AHEC) has produced guidelines with the aim of protecting the welfare and the rights of human participants in research.
See also: Ethical conduct of research, and Health & human research ethics available from the NHMRC website .
Guidelines approved under Section 95A of the Privacy Act 1988
These provide a framework to ensure privacy protection of health information that is collected, used or disclosed in the conduct of research and the compilation or analysis of statistics, relevant to public health or public safety, and in the conduct of health service management activities.
General Medical Council
The GMC's ethics guidelines help define professional standards.
The World Medical Association
The WMA agreed to the Declaration of Helsinki, which is the most influential code of research ethics; the code is available on their website.
Ethical Behaviour in General Practice: RACGP
The Royal College of General Practitioners has articulated a set of principles by which it stands in supporting general practitioners to maintain high quality ethical practice (RACGP Values for General Practice).
Guidelines for the Ethical Conduct of Evaluations
Australian Evaluation Society
These guidelines are widely used by rganisations as a training resource and to inform their evaluation
policies. They are intended to promote the ethical practice of evaluation, stimulate discussion, and to help resolve ethical issues that arise in the course of an evaluation.
ethical approval needed?
'When does Quality Assurance in Health Care Require Independent Ethical Review?'
This document provides advice to institutions, Human Research Ethics Committees and health care professionals about how to identify when quality assurance proposals require ethical review.
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Relevant articles
Search Bioethics on Pub Med
Pub Med has a specialised search function to locate bioethics articles. Take the above link to Pub Med, enter the search terms for the field you are interested in, then use the Limits tab and click on the Bioethics check box.
'Bias from requiring explicit consent from all participants in observational research: prospective, population based study' Al-Shahi, R, Vousden, C, Warlow, C (2005). Bias from requiring explicit consent from all participants in observational research: prospective, population based study, BMJ , vol 331:942.
This study found differences between adults who consent to participate in observational records-based research and those who do not, or cannot, consent. The researchers conclude that "blanket requirements for explicit consent for the use of individuals' identifiable data can bias disease registers, epidemiological studies, and health services research".
'Patients' consent preferences for research uses of information in electronic medical records: interview and survey data' Willison, D., Keshavjee, K., Nair, K., Goldsmith, C., & Holbrook, A. (2003). Patients' consent preferences for research uses of information in electronic medical records: interview and survey data, BMJ , 326, p. 373.
'Patient privacy and confidentiality' Chalmers, J.& Muir, R. (2003). Patient privacy and confidentiality, BMJ, 326, 725-726.
'Practical Ethics for General Practice' Rogers W & Braunack-Mayer A. (2004). Practical Ethics for General Practice . Oxford University Press.
This book provides an accessible account of ethics in general practice, addressing concerns identified by practitioners. It is based on examples from general practice, and uses a contents list developed through discussions with GPs, trainers and GP registrars.
'Recruiting patients to medical research: double blind randomised trial of "opt-in" versus "opt-out" strategies' Junghans, C, Feder, G, Hemingway, H, Timmis, A, Jones, M. (2005). Recruiting patients to medical research: double blind randomised trial of "opt-in" versus "opt-out" strategies, BMJ, vol 331: 940.
This study found that the opt-in approach to participant recruitment, increasingly required by ethics committees, resulted in lower response rates and a biased sample. The researchers propose that the opt-out approach should be the default recruitment strategy for studies with low risk to participants.
'Supporting primary care with ethics advice and education' Peile, E. (2001). Supporting primary care with ethics advice and education, BMJ , 323, 3-4.
'Towards evidence based bioethics' Halpern, Scott D (2005). Towards evidence based bioethics, BMJ, vol 331:901-903.
"Use of epidemiological methods to study human behaviour is necessary to create an evidence base to inform ethical positions in medicine and science".
'Research ethics committees: what is their contribution?' Loff, B., & and Black, J. (2004). Research ethics committees: what is their contribution?, Med J Aust , 181,(8), 440-441.
"Perhaps a week of intensive training in critical thinking would be the best preparation for members of research ethics committees." |
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Links
National Center for Bioethics Literature
NRCBL is a specialised collection of books, journals, newspaper articles, legal materials, regulations, codes, government publications, and other relevant documents concerned with issues in biomedical and professional ethics." There is a well resourced set of links to many bioethics websites and organisations.
Bioethics Discussion Page
This website provides good background to bioethics and illustrates the types of issues involved. There are many opportunities to participate in debate about certain ethical issues, which not only provide a forum for discussion but the opportunity for new comers to understand the issues better.
The Hastings Center
One of the first bioethics centres in the world, it publishes the 'Hastings Center Report'. Their website includes interesting material about their activities and useful online resources.
National Institutes of Health Bioethics Resources
This website gathers together resources for those with an interest in bioethics including education, research involving human participants and animals, medical and health care ethics, and the implications of applied genetics and biotechnology.
australian research focussing on ethical issues
The following projects were conducted with funding from the General Practice Evaluation Program (GPEP):
- Confidentiality And The General Practitioner. GPEP Project #394
- Development of a methodological apparatus for the empirical analysis of the ethical component of clinical general practice. GPEP project #728
- Ethical Issues In General Practice: GPs' And Consumers' Perspectives. GPEP project #386
- Quality And Ethics For GPs And Consumers With Disabilities. GPEP project #345
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