Do ethics make a difference? Roger Watson Professor of Nursing University of Hull 12 April 2015

What are ethics? Ethics are what you do when nobody is looking

Without ethics Your guess is as good as mine Expediency rules People become objects Dishonesty becomes common practice Extremism takes over

Where do ethics apply? Patient care decisions Research involving patients Research not involving patients Reporting research results

Patient care Issues: –Information giving –Information sharing –End-of-life decisions –Prioritisation of resources

Information giving What is wrong with me? Am I dying? Will I get better? How long will I live?

Information sharing Should a family know a diagnosis before the patient? Does a family member or any significant other have a right to know what it wrong with a patient? Should patient information be available for research?

End-of-life decisions Should life be extended at any cost? –To the individual? –To society? Is euthanasia acceptable? Who knows best?

Prioritisation of resources To whom should scarce medical resources be available? Whose life is more important: e.g mother or unborn child? Should we invest in prevention or cure?

Ethical requirements in research Necessary to ensure that harm to participants is minimised

Ethical frameworks Deontological –Based on rules Utilitarian –The end justifies the means Personal –What you think is right

Ethical framework A commonly used framework is that of Beauchamp & Childress: –respect for autonomy –non-maleficence –beneficence –justice

Respect for autonomy: respecting the decision-making capacities of autonomous persons enabling individuals to make reasoned informed choices.

Beneficence this considers the balancing of benefits of treatment against the risks and costs the healthcare professional should act in a way that benefits the patient

Non maleficence avoiding the causation of harm the healthcare professional should not harm the patient. All treatment involves some harm, even if minimal, but the harm should not be disproportionate to the benefits of treatment.

Justice distributing benefits, risks and costs fairly the notion that patients in similar positions should be treated in a similar manner.

Ethics specific to research Respect for autonomy Informed consent (1) – Information Full information about what participation means must be provided to the participants Information must be: – For a wide reading ability – Written in non-technical language – Explain risks and benefits

Ethics specific to research Respect for autonomy Informed consent (2) – Consent People must give their consent prior to participation Consent should be signed People should be able to withdraw without prejudice to their treatment Special considerations – Incentives – People unable to give consent

Ethics specific to research Beneficence The outcome – by intention – of the research should have the potential to do good (general)

Ethics specific to research Non maleficence The outcome – by intention – of the research should have the potential to do no harm (general) If the research is harming the participant then there must be a mechanism to detect and withdraw the participant (specific)

Ethics specific to research Justice Research should not only be designed for the ‘normal’ demographics in terms of: – Age – Ability – Social status – Ethnicity

Governance of research Mechanisms must be in place to: Training and certification of those involved in research Monitor compliance with ethical requirements Check record keeping of: – Consent – Recruitment – Reporting of adverse events consequences – Follow up of participants

Reporting research Avoiding fraud: Fabrication: – Invention of data or cases Falsification: – Wilful distortion of data Ignoring outliers? Not admitting that some data are missing. Post hoc analyses that are not admitted? Not including data on side effects in a clinical trial

Ethical Issues in Publication 1.Duplicate Publication 2.Authorship and Order 3.Scientific Misconduct (including plagiarism) 4.Conflict of interest

Duplicators and plagiarisers 62,312 Medline citations (sample) 0.04% with no shared author but content highly similar = plagiarism 1.35% with shared authors and highly similar content = duplication Therefore, possibly 3500 plagiarised and 117,500 duplicate papers (Mounir Errami et al 2008)

Duplicate Publication Not republishing the same findings Not submitting the same manuscript to two or more journals at once Not dividing one research project into many little papers (“salami slicing”)

Authorship Who can be an author? Authorship order Issues and problems with authorship

Authorship International Committee of Medical Journal Editors (ICMJE) at states authorship is based on: 1) substantial contributions to the conception and design of a paper, or acquisition of data or analysis and interpretation of data, and, 2) drafting the article or revising it critically for important intellectual content and final approval of the version to be published.

Plagiarism Plagiarism ranges from the unreferenced use of others’ published and unpublished ideas, including research grant applications to submission under “new” authorship of a complete paper, sometimes in a different language. It may occur at any stage of planning, research, writing, or publication: it applies to print and electronic versions.

What is Conflict of Interest? Conflict of interest – a set of conditions in which professional judgement concerning a primary interest (such as the validity of a research study) tends to be unduly influenced by a secondary interest (such as financial gain). –....or may give that impression

Committee on Publication Ethics (COPE) Founded in 1997 as a response to growing anxiety about the integrity of authors submitting studies to medical journals. Founded by British Medical Journal & Lancet editors

Do ethics make a difference?