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.
Here at BioethicsBytes we aim to recommend good clips from TV programmes that might be useful in discussing ethics associated with biology and biomedicine. We don’t usually have time to offer any warnings against watching particular programmes. One very disappointing recent pseudo-documentary was Channel 4’s offering Fat Family Tree (First broadcast 23rd May 2013, TRILT code: 03163CBC). We had been promised insight into “whether unlocking the secrets of families’ genes can help provide an answer to weight problems” with the participants taking “a unique DNA test to find out if the genes they have inherited could help explain their weight problems”.
Unfortunately, the reality was very superficial. Luckily for me, Linda Wijlaars over at the Progress Educational Trust’s BioNews has already written an excellent harsh-but-fair critique of the show.
Summary of story: The Welsh government’s has published a White Paper Proposals for Legislation on Organ and Tissue Donation: A Welsh Government White Paper in which they outline their intention to change the law regarding organ donation. In keeping with the rest of the UK, Wales current has an “opt-in” system, in which a person has to actively indicate (e.g. by signing organ donor register) that they give consent for their organs to be used by the NHS. Under the proposed system of presumed consent, all adults resident in Wales will automatically be placed upon the register; if anyone wishes to withdraw their consent they must actively remove themselves from the list. Many countries already operate this “opt-out” system; including, in Europe, such countries as France, Spain, Austria, Belgium, Norway and Sweden. In the news coverage, Glyn Davies MP state his opposition to the proposal, highlighting concerns about both the efficacy of the new system, and whether adequate consideration will be given to ethical aspects of the change.
Discussion of ethical issues: One ethical argument against presumed consent suggests that it violates the patient’s right to make an informed decision, and so does not uphold respect for their autonomy (Gillon, 1994). The specific purpose of informed consent is to protect a patient’s right to autonomy, as made clear by both the Universal Declaration on Bioethics and Human Rights (UNESCO, 2005) and the Declaration of Helsinki (World Medical Association, 2008).Enforcing presumed consent would remove the need for informed consent, and as such would be “a violation of an individual’s autonomy” (Kurosu, 2008). Presumed consent, it is argued, forces patients either to become donors, or to state their wish to not become donors; in both instances the patient’s autonomy is violated, as “compelling patients is unethical” (Kurosu, 2008). This deontological argument suggests a move to presume consent in Wales would be intrinsically unethical. Similarly, Kennedy et al. (1998)consider that a government body “assuming possession of our body parts” would be “a step too far”. Read the rest of this entry »
Summary of story: For the past decade, researchers at the University of Guelph, Canada, has been developing a line of Yorkshire pigs now known as Enviropig. In January 2011, a BBC reporter had the opportunity to see the pigs in a research facility while applications to approve the Enviropig for human consumption were being deliberated by the US Food and Drug Administration. The Enviropig has been genetically modified to contain genes from Escherichia coli and mice and bred over several generations to become more environmentally friendly by reducing the toxicity of their waste.
Discussion of ethical issues: Development of the Enviropig raises a number of ethical questions. Some of these relate to issues of animal rights, some relate to genetic modification of organism in general and foods in particular. Given the reasons behind the investment in the Enviropig research, there are also specific issues relating to environmental ethics, and this represents a good place to begin evaluation.
Intensive pig farming produces large amounts of manure which contains high levels of phosphate. Whilst some phosphate is vital to life, and is necessary for good plant growth, high concentrations can lead to disruption and poisoning of ecosystems. Runoff from pig farms can lead to eutrophication of nearby water ecosystems, which can potentially lead to the water becoming anoxic and unable to support life (University of Guelph, 2011). Enviropig has been genetically modified to produce phytase in its saliva. This enzyme is important for the breakdown of phytic acid, an indigestible form of phosphorus commonly found in cereal-based foodstuffs. Bacteria in the guts of cattle and other ruminants, but not pigs, normally provide this enzyme allowing this dietary phosphate to be released and used by the mammal. Read the rest of this entry »
Summary of story: In November 2011, The National Institute of Health and Clinical Excellence (NICE) updated its clinical guidance to health care professionals regarding caesarean sections. This update helps ensure “every mum-to-be in England and Wales can request [a caesarean birth].” The story examines the case of Leigh East, who had concerns over a vaginal birth due to a pre-existing back injury. She was initially refused a caesarean section (CS), but was allowed the treatment after her own research persuaded her midwife to allow it. East said, “There was a great deal of pressure initially to not plan a caesarean”.
The report continues by covering how women who have had a traumatic experience with natural childbirth in the past should be treated. This includes offering counselling and, ultimately, the option for a caesarean birth if the woman is not reassured. Jenny Clery, Head of Midwifery at Whittington Hospital, said “you shouldn’t force anything on anybody, i.e. go into labour and we’ll see what happens.” The report finishes by stating the new guidelines are there to help women make an inform decision regarding mode of birth (BBC, 2011a).
Discussion of ethical issues: There are many ethical issues surrounding a woman’s choice regarding the mechanism of delivery for her unborn child. Doctors are faced with decisions requiring them to take each case individually, taking a consequentialist approach to each mode of birth, whilst also considering patient autonomy. The Changing Childbirth report (Expert Maternity Group & Cumberlege J., 1993) makes it an explicit right for a woman to be involved in decisions regarding all aspects of her pregnancy and childbirth. Read the rest of this entry »
Summary of story: In July 2011 Tom Condliff, a 22-stone man lost his Court of Appeal case for a life-saving gastric bypass operation which had a detrimental impact on his family life and mental well-being (BBC, 2011a). The North Staffordshire primary care trust (PCT) refused to fund the procedure arguing that he failed to fulfil their IFR (individual funding response) policy and his body mass index (BMI) of 43 was below their threshold. He claimed the main reason he gained weight stemmed from drugs that he took for long term diabetes and the procedure was the best solution in order to prolong his life. In August 2011, subsequent to the events in this story, the PCT reviewed his case again and decided to fund his procedure as they now saw his case as an exceptional circumstance (BBC, 2011b). After having the operation, Condliff was reported to have lost six stone (Doward, 2012).
Discussion of ethical issues: The ‘four principles’ of autonomy, beneficence, non-maleficence and justice are widely recognised as the cornerstones of biomedical ethics. In this case, the principle of justice is brought into question. Chadwick (2008) says ‘justice in allocation’ is a bioethical issue since resources can be unfairly distributed and people can be discriminated against. Article 2 of The European Convention on Human Rights (ECHR, 1950) state “everyone’s right to life shall be protected by law…” but also notes that this must not be interpreted in a way as to put an impossible burden upon the authorities (Foster, 2007). Tom Condliff, a man seeking a gastric bypass, had to battle against his PCT to have them fund the operation. He argued that it was a breach of his rights under Article 8 of the ECHR (right to a family life) for the PCT to restrict their decision to clinical factors, and Article 6 (right to a fair trial) for not giving him sufficient details regarding their reasoning (Alexander Thomas Condliff v North Staffordshire Primary Care Trust, 2011). The Court found against Mr Condliff (though, as noted above, the PCT eventually relented). Read the rest of this entry »
Summary of story: Scientists from the Universities of Edinburgh and Cambridge have created genetically modified chickens that are unable to transmit the H5N1 “bird flu” virus between individuals. This effect was generated by inserting genetic information coding for a ‘decoy’ RNA hairpin molecule that acts as an inhibitor for the RNA polymerase enzyme required for replication of the flu virus (Lyall et al, 2011). It has been suggested that this approach may offer a means to reduce the extent to which bird populations act as a reservoir for flu and other diseases.
Discussion of ethical issues: This story presents ethical tension on two levels; the possible benefits and complications for the chickens themselves, but also the implications for the human population. Laws relating to the use of Genetically Modified Organisms (GMOs) vary in different parts of the world. In the UK, the law covering the creation and use of GMOs is set out by the Health and Safety Executive. This requires any experimentation to undergo strict risk assessment, notification of the authorities regarding any GM activity, and total clarity and public availability of information gathered by the research (HSE, 2011). In this case, Sang and her team at the Roslin Institute, Edinburgh have complied with these regulations and the necessary details are included in the final paper (Lyall et al, 2011). Read the rest of this entry »
My notes on the episode, divided into principal sections
On reflection, I think 2012 was a good year for the BBC’s flagship science programme Horizon. One of my favourite episodes came way back in January, when Dr Adam Rutherford fronted the one hour documentary Playing Godon the emerging discipline of synthetic biology.From a bioethical standpoint, this was a particularly strong episode with good coverage of the science, the potential advantages and the potential pitfalls of synthetic biology clearly demonstrated. My notes on the episode are available here.
The full episode is no longer on iPlayer, but a series of clips are still on the official Horizon website and are mirrored on the BBC’s official YouTube channel (in the list below the title link goes to the BBC Horizon site, the end link to YouTube). In terms of potential clips for teaching it therefore makes sense to start with these sections although, as we will note below, the best section on ethics is not included among the official clips.
Title sequence (duration 1:47) Content: The opening sequence sets out the key themes for the programme – the contrast of billions of years of evolution versus the emerging potential to predetermine the development of new species; life as a programmable biological machine. This power has great potential for good but might be abused. Comments: Of the five available clips, I don’t think this would be my first choice for introducing the issues as there isn’t quite enough detail without subsequently seeing those themes expanded in the rest of the programme. (YouTube).
An animal that shouldn’t really exist (duration 3:14) Content: Rutherford visits a farm in Logan County, a research facility belonging to Utah State University. Prof Randy Lewis explains the attractive properties of spiders’ silk to him, and the fact that the spiders’ cannibalistic tendencies make them impossible to farm directly in order to produce adequate quantities of the material. The solution? Transferring the gene for the silk protein into another animal to produce an organism “part spider, part something else”, with the next clip revealing that to be a goat. Comments: This clip and the next are actually from the same section of the programme and could usefully be shown back to back (total = 6 mins). (YouTube).
The goats with spider genes and silk in their milk (duration 2:43) Content: Continuing their discussion at the research farm in Utah, Rutherford is introduced to the “spider goats” by researcher Randy Lewis. The goats have been engineered to produce the protein for spider silk and extrude it in their milk. When challenged that this is “bizarre”, Lewis counters that he considers the goats to be “absolutely normal”. The clip goes on to show the goats being milked but does not include extraction of the silk, which was shown elsewhere in the programme Comments: I don’t like the use of the term “spider goat” as it implies something much more of a hybrid or a chimera than the reality – which is a goat with one gene added. We have discussed some of the issues surrounding such transgenic animals in other posts on BioethicsBytes, especially in regard to the Animal Farm documentary series and associated extended commentaries. Nevertheless, this section does usefully highlight some of the attractive features of this kind of bioengineering – the capacity to produce a valuable protein in an easily harvestable form (YouTube).
Playing God, by recreating life (duration 4:38) Content: This section discusses the 2010 announcement of the production of Synthia by Craig Venter and colleagues. Synthia, or Mycoplasma mycoides JCVI-syn1.0 the more formal name for the organism, is “the only lifeform on earth whose parent is a computer”. (this is a reference to the fact that the sequence of DNA in Synthia was decided in advance using online genome databases and then the DNA molecules themselves were produced chemically as a series of shorter sections assembled together to make the complete genome for the cell). The clip includes a section where Rutherford uses white and red candle wax to draw out cells of two different species (more of that in a moment). As he points out Venter’s team can’t truly be said to have “created” life since – aside from addition of a few DNA ‘watermarks’ to identify the species – the DNA code had essentially been purloined from another related bacterium. “Recreated” or “rebooted” might be nearer the mark, Rutherford suggests. Even putting the hype to one side, he emphasises that this is an unprecedented degree of control over a living thing. Comments: Overall this is a nice section, summarising the achievements of making Synthia, without getting too sucked in to the hype. On the downside, the demonstrations are a little confusing – the drawing of cells using candle wax inadvertently implies that the cells have a nucleus which, as bacteria, they don’t (YouTube).
Mind control (duration 2:22) Content: Rutherford visits Ed Boyden in his lab at the Massachusetts Institute of Technology to discuss his pioneering work in synthetic neurobiology, a step from controlling microbes to controlling the brain, the “most precious part of our anatomy”. Comments: A slightly frustrating clip, it ends just as it’s getting to the interesting bit! (YouTube).
Frustratingly, the producers have not made available the clips with the most overt bioethical content. If you have access to the full programme (TRILT code: 0243AA4F; available as an off-air recording to BUFVC members) then I would favour the following sections:
16:16 to 20:55 where the “biobricks” approach is raised
25:56 to 33:11 manufacture of “biodiesel”
41:21 to 45:33 introduction to garage or DIY biology, aka “biohacking”
Ethical concerns include:
– safety and the risk of modified organisms escaping (though this is partly countered by reference to the inclusion of inbuilt metabolic “kill switches”, see section 34:18 to 36:02). This is a consequentialist argument.
– exploitation of the poor, with necessary agricultural land being given over instead to growing plants as feedstuff for the bioplastics industry (section 36:03 to 38:02). Again a consequentialist argument.
– risks of bioterrorism, especially as the necessary molecular biology moves out from the lab and into suburban garages (section 38:03 to 41:20).
– playing god, a deontological argument, raised in the clip of the same name.
Rutherford’s closing statement nicely encapsulates the situation we are in at the moment “Whatever you think of the uneasy bargain that surrounds synthetic biology, one thing is absolutely clear. We have created for ourselves unprecedented power over life itself” (58:22).
The SCHB has developed a database of films with bioethical themes
At BioethicsBytes we are sometimes asked if we know a good movie or documentary on a particular ethical topic. On many occasions we do, but our strategy here has generally been only to list items when we are specifically recommending a clip or a certain use of a film, rather than producing an overall list.
I am delighted therefore that the Scottish Council on Human Bioethics has just released a resource where they have a longer list of potential films and TV programmes organised by theme. The list can be accessed via this link. Remember to check back here afterwards to see if we’ve discussed the film on more detail.
Construction of Bioethics in NewsFilm Online was principally the work of final year undergraduate Sarah Curtis
There are growing collections of online videos suitable for teaching about bioethics. Amongst these, one of the less-known resources is NewsFilm Online (NFO), a collection of several thousand news stories, of which a very respectable number include bioethics-related material. To raise awareness of this footage, we have developed an additional website Bioethics in NewsFilm Online, where many of the clips are rated and reviewed.
Unfortunately access to some service on the main NFO website, including the ability to download news clips, is constrained to member institutions (mostly UK Universities) – if you think you could make valuable educational use of these materials but are unable to access NFO, we suggest you contact EDINA who manage that site.
Posted by Chris Willmott 
Headline Bioethics: Enviropig – significant advance or environmental ‘band-aid’?
January 9, 2013[A printable version of this Headline Bioethics Commentary is available via this link]
Clip: ‘Enviropigs’: genetically modified for food consumption
Date of Story: 4 January 2011
Summary of story: For the past decade, researchers at the University of Guelph, Canada, has been developing a line of Yorkshire pigs now known as Enviropig. In January 2011, a BBC reporter had the opportunity to see the pigs in a research facility while applications to approve the Enviropig for human consumption were being deliberated by the US Food and Drug Administration. The Enviropig has been genetically modified to contain genes from Escherichia coli and mice and bred over several generations to become more environmentally friendly by reducing the toxicity of their waste.
Discussion of ethical issues: Development of the Enviropig raises a number of ethical questions. Some of these relate to issues of animal rights, some relate to genetic modification of organism in general and foods in particular. Given the reasons behind the investment in the Enviropig research, there are also specific issues relating to environmental ethics, and this represents a good place to begin evaluation.
Intensive pig farming produces large amounts of manure which contains high levels of phosphate. Whilst some phosphate is vital to life, and is necessary for good plant growth, high concentrations can lead to disruption and poisoning of ecosystems. Runoff from pig farms can lead to eutrophication of nearby water ecosystems, which can potentially lead to the water becoming anoxic and unable to support life (University of Guelph, 2011). Enviropig has been genetically modified to produce phytase in its saliva. This enzyme is important for the breakdown of phytic acid, an indigestible form of phosphorus commonly found in cereal-based foodstuffs. Bacteria in the guts of cattle and other ruminants, but not pigs, normally provide this enzyme allowing this dietary phosphate to be released and used by the mammal. Read the rest of this entry »