June 16, 2015
Investigations such as genome sequencing and brain imaging have the potential to reveal details about the patient of research subject which were not the principal reason for the study. The ethical issues associated with such “incidental findings” is the subject of this short film, made by students at the University of Leicester.
The video was rated the third best produced by students in the 2014-15 cohort.
People interested in knowing more about the topic might also like to read:
Green et al. (2013) ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing Genetics in Medicine 15:565-574
Vernooji et al. (2007) Incidental Findings on Brain MRI in the General Population New England Journal of Medicine 357:1821-1828
December 20, 2013
Stories discussed in Dark Matters could prove useful when teaching about research ethics
I discovered recently that the Discovery Science channel has an interesting little series called Dark Matters: Twisted but true. Started in 2011, to date there have been two series of the show. Typically each 45 minute episode looks at three separate examples of “strange science”. The standard format for each tale includes historical reenactment and soundbite interviews with experts from the field.
In truth the choice of incidents discussed is patchy; some aligning poorly with the definition of “science”, or “strange”, or both. The subtitle “Twisted but true” gives insight into the audience for whom the series may be targeted. We also need to be slightly cautious about putting too much reliance on the validity of docudrama versions of events.
Having said that, however, there are plenty of examples here which could be used as introductions to some of the more notorious breaches of research ethics. For example, Season 2 Episode 2 (TRILT 02F8C452) discusses Louis Pasteur’s testing of an experimental rabies vaccine on Joseph Meister. Episode 2.6 (TRILT 02FB2D0F) includes recreation of the notorious Stanford prison experiment, and 2.7 (TRILT 02FD7B36) discusses the Tuskegee syphilis experiment in which poor sharecroppers with syphilis were deliberately kept untreated, even after the efficacy of penicillin for treating the illness had been demonstrated.
September 3, 2013
[A printable version of this Headline Bioethics Commentary is available via this link]
Author: Nick McDonald
Clip: Experts delay call on releasing controversial H5N1 work
Date of story: 17th February 2012
Summary of story: In the period 2003–2011, 566 cases of people infected by bird flu worldwide were reported to WHO (2011), with 59% of the cases being fatal. The virus has been known to infect people since 1997 (Grady and Broad, 2011), but only through infected birds, and not via person-to-person transmission(Yong, 2012b). Herfst et al (2012) and Imai et al (2012) mutated H5N1 to see if it could acquire the mutations necessary for airborne transmission between ferrets (considered a good model for humans) in the wild. This research was due to be published in the journals Nature and Science, but the National Science Advisory Board for Biosecurity (NSABB) asked the journals to delay publication, and recommended that key methods should be omitted (Grady and Broad, 2011) due to fears of the virus being released “by error or by terror” (Keim, 2012) and the “potential risk of public harm to be of unusually high magnitude” (Berns, 2012). Eventually in March of 2012 the NSABB agreed that the two papers should be published in full (Yong, 2012a). The video from February 2012 reports on the decision to delay publication.
Discussion of ethical issues: The decision about whether or not to publish details of the process by which H5N1 could be render easier to transmit is a good example of a dual-use dilemma, defined by Atlas and Dando (2006: p276) as “the generation and dissemination of scientific knowledge that could be misapplied for biological weapons development and production”. Kuhlau et al (2011) argue that if a dual-use technology poses a legitimate threat, the science community is obliged to develop, implement and adhere to precautious measures to meet the concern. Read the rest of this entry »
December 28, 2012
I’m sure many readers of BioethicsBytes are already familiar with the TED Talks phenomenon but, as far as I’m aware this is the first time we’ve directly recommended one of their videos on this site. TED events, and later online videos, involve invited participants in giving “the talk of their lives” in 18 minutes or less. The result is a collection of pithy and thought-provoking presentations on a variety of topics.
Ben Goldacre shines a spotlight on poor and dangerous practice in the pharmaceutical industry
Ben Goldacre is a medically-qualified writer who has devoted much of his time drawing the public’s attention to examples of pseudoscience and inappropriate uses of science, originally via his regular Bad Science column in the Guardian newspaper and later in his first book, of the same name (see here for a review of the book Bad Science).
In 2012, Goldacre has turned his penetrating gaze on the pharmaceutical industry and the results, now available in his second book Bad Pharma, have brought to a wider audience concerns about the ‘tricks’ that are played by drug companies to make their products seem more successful than is warranted. Read the rest of this entry »
December 31, 2011
Rise of the Planet of the Apes, now available on DVD, was one of the blockbuster releases in the summer of 2011. A prequel to the classic series of films (5 cinema releases between 1968 and 1973, TV spin-off and Tim Burton’s 2001 remake of the main Planet of the Apes), the new movie tries to offer a plausible mechanisms for the evolution of apes into a dominant global force.
(Warning: contains spoilers!) The new film is a veritable gold-mine for discussion of ethical topics, it would make as excellent vehicle for an engaging “film night”. In terms of bioethical issues, the film touches on all of the following:
- Research ethics – there are lots of examples where aspects of the conduct of research are raised (some of which are picked out specifically in the list below). The motivations for doing research are touched upon at several points in the film – these include financial gain, fame and a desire to do good, both for mankind in general and specifically for the benefit of a relative in need. GenSys boss Steven Jacobs (David Oyelowo) is the embodiment of profit as a driver for research whereas Will Rodman (James Franco) represents more noble aspirations. A discussion of the ethics of research funding could follow naturally. Read the rest of this entry »
September 8, 2011
The Briefing contains recommendations about useful resources for teaching about various aspects of bioethics
Anyone involved in teaching ethics to bioscience students should get hold of a copy of Ethics in the biosciences: Resources, references and tools for ethics teaching in the biosciences. This is the second Briefing document produced by the UK Centre for Bioscience (the first was on Assessment).
The new booklet includes coverage of the following topics:
- Teaching ethics
- Assessing ethics
- Ethical theory: How are ethical decisions made?
- The ethics of being a scientist
- Environmental ethics
- Issues at the beginning of life
- Issues at the end of life
- Genetics and genomes
- Animal experimentation
- Ethics and Risk
Each chapter includes a short introduction written by an expert on the topic and then a recommendations of other resources (websites, books, articles, slides, videos, etc) which have proven to be useful in teaching on the subject.
In addition to the online version of the booklet, a number of hard copies have been produced – if you would like one please contact the UK Centre for Bioscience before December 2011 when, unfortunately, their activities will be substantially scaled back.
May 19, 2011
I gave a presentation at a recent meeting of the UK Centre for Bioscience day conference on Some (in)famous cases of research conduct. I’ve uploaded both the slides (below, and on Slideshare) as well as a table summarising who, what, when and my classification of what category or categories of research misconduct they represent. Some of the discussion at the session was of the “why haven’t you included Dr So-and-so?” variety. One of two of these were new to me, but mostly I had made a conscious decision to exclude the person named, either because they have since been exonerated or because the jury is still out. I’d welcome suggestions for other examples to include in a revised version.
Other presentations from the Teaching Research Ethics to Bioscience Students day conference are available via this link.