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Ethics

I won’t be coming to work today – I’d rather go back to sleep

The BBC
reported yesterday that the inability of
some people to get out of bed in the morning is genetically determined. A study at the University of Zurich
found that individual cells have ‘clocks’, which regulate body processes. The schedule of these clocks determines whether one is better suited to early mornings or late nights.

When a pattern of behaviour is found to be
biologically based, those who exhibit it often find themselves excused from
responsibility for it, particularly if it is correctable. It is not the fault of dyslexics that they
make mistakes reading and spelling, and it is not the fault of Tourette
syndrome sufferers that they make offensive remarks. As a result, medical help is provided for
sufferers of these conditions. Sometimes, however, the view that those who exhibit undesirable,
biologically-determined behaviour should be excused from responsibility for it,
and their behaviour medically corrected, is controversial. For example, many view the widespread
prescription of Ritalin to treat attention-deficit hyperactivity disorder
(ADHD) in children as suspect, in part because it encourages the view that
unruly but normal children are diseased, and therefore excuses those children
and their parents from applying discipline to reign in the offending behaviour.

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Paying for better health: Should patients be able to pay for expensive cancer drugs?

In the last month there have been a number of cases of patients with terminal cancer appealing for access to novel drugs that are not currently funded under the NHS. In Scotland yesterday a man with terminal bowel cancer succeeded in his battle to get NHS funding for a new and expensive drug cetuximab. This follows the recent publicity over two patients with breast cancer who have been fighting to be allowed to pay privately for another new drug bevacizumab.

These drugs are genetically engineered antibodies developed by a US biotech company to target growth factors commonly found in tumour cells. The drugs have been shown to improve survival of patients with some cancers, but evidence is lacking in other types of cancer.

This sort of dilemma is not unique to the UK. There is similar debate about access to bevacizumab in Canada and Australia. Some of the debate is about the science, and whether or not the drugs have been conclusively proven to be of benefit. However there are also ethical questions about the rationing of expensive treatments in public health care systems. It is generally accepted that there are finite resources available for healthcare, and that not all treatments can be afforded. But if public funding isn’t available for health treatment should patients be able to pay privately to access them?

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A presumed consent system for organ donation

Earlier this month, Gordon Brown, writing in the Sunday Telegraph, voiced his support for a presumed consent system for post-death organ donation in the UK. At present, organs may be procured from a dead body without the family’s consent if the deceased had actively opted-on to a national organ donation register. Under a presumed consent system, all would be included on the register unless they had actively ‘opted out’.

Objecting to Brown’s proposal, the economist and journalist Irwin Stelzer writes in the Telegraph this week:

90 per cent of us favour organ donation, but only 25 per cent make advance arrangements to become donors. From that, the opt-out advocates conclude that most of the non-donors are merely negligent: they forget to register. Really?

It is equally plausible that non-participants have no objection to the procedure, but simply do not want to participate, just as many (most) people have no objection to elections, but choose not to participate, for reasons sufficient unto themselves.

This objection strikes me as unpersuasive.

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I’m Not a Number; I’m a Human Being: RFID Tags and Our Personas

Swedish athletes Carolina Klüft and Stefan Holm (currently reigning Olympic champions in the heptathlon and high-jump events) recently suggested that elite athletes might have an obligation to implant chips or carry GPS transmitters in order to allow anti-doping organisations to track them. Meanwhile medical researchers debate whether patients should be tagged implanted chips for identification purposes. While such suggestions almost universally provoke a shudder and remarks about Orwell’s 1984 other people voluntarily chip themselves: some to access nightclubs, others to "hack" themselves. We might resist some privacy invasions, but eagerly invite others. Should we just get it over with and let the government tag us all?

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Who is your hard drive working for?

Western Digital, a producer of networked
hard drives that enable users to access their files across the net, has blocked customers
from sharing media files from their drives. Needless to say, users are not
amused and hard at work at finding workarounds. The move is possibly a
pre-emptive way for the company to avoid being sued by the content industry for
providing a means for piracy. The block covers most popular media formats,
regardless of who owns the copyright of the contents. This makes it impossible
for users to share e.g. home videos or their own creations. Who really owns the
hard drive – the customer or Western Digital?

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Private genetic tests, and the case for ‘Genetic education’

An advisory body to the UK government, the Human Genetics Commission has called for more regulation of genetic tests that are available for the public to buy privately.

The completion of the human genome project, and the advances (and economies) in genetic technology have led to a burgeoning industry in private genetic tests. In the US especially, but increasingly also in Europe it is possible to order a wide range of tests for genes associated with risk of disease.

It is argued that tests with significant health implications should not be advertised to the public, and should be available only through a medical practitioner. But is this attitude to testing unduly paternalistic? Is greater regulation a realistic response?

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Honest Opinions or Bullying?

Recently the website SpickMich.de that allows German pupils to anonymously rate their teachers defeated a legal challenge from teachers claiming invasion of personal privacy.
This was just the latest of a series of legal victories for the site. German courts have found that freedom of speech trumps teacher concerns about privacy and mobbing. Rating teachers, the court found, is a value judgement protected by law as long as it does not cross the line into "abusive criticism".

Teacher’s unions are however likely to continue criticising such sites. Andreas Meyer-Lauber, chairman of the union GEW in the state of North Rhine-Westphalia has complained that pupils have no competence to judge teaching quality. "We need an impartial dialog between students and teacher," he said. "The Internet is not an appropriate medium for internal school feedback and self-evaluation."

But maybe that is exactly what the Internet could be?

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Feeling good about the failure of others

The journal Science last week published a study indicating that the reward centres in our brains are highly sensitive to the success of others. In the study, 19 pairs of subjects were presented with a task involving the estimation of the number of dots on a screen, and were then provided with feedback about their perfromance and about a monetary payment that they would receive. They were also provided with the same information about the other member of the pair. Functional magnetic resonance imaging (fMRI) was used to ascertain the effects of this feedback on blood flow in the midbrain-striatal and midbrain-prefrontal dopaminergic projections – parts of the brain implicated in generating subjective rewards, such as positive feelings, in response to achievement. The researchers analysed the cases in which both members of the pair were successful on the task and found that, in such cases, the reward centres activated more strongly in response to a given payment when the other member of the pair received a lower payment than when the other received an identical or higher payment.

The main conclusion that the authors draw from this finding is that it supports the widely held view that subjective rewards are sensitive to the success of others, at least where success is measured in financial terms. Existing studies claiming to support this view have faced difficulties in, among other things, measuring subjective rewards, but the authors of the Science article suggest they they can avoid this difficulty by using activation of the reward centres as an objective proxy for subjective feelings.

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Our Obligations to the Poor

The relationship between the rich and the poor countries of the world has been questioned in a number of ways today. Oxfam have released a report, Investing for Life, which suggests that pharmaceutical companies are missing an important opportunity by not focussing their attention on the large health problems of the poorest countries. At the same time, in the US, apparently significant developments have been made in the production of drought–resistant crops and, in the UK, the government’s chief scientific adviser will call for a rethink on GM crops.

These two issues pull in interestingly different ways. In the first case, the challenging question is how best to balance the value of a market-based research industry with the need to provide assistance to the poorest countries. In the second, the challenge is the price we are prepared to pay for our worries about genetically modified crops. In both cases our obligations to the poor sheds important light on the values of our society.

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The importance of life extension

One of the most important ideas in public health is that we can never really save lives: we just extend them. If a doctor ‘saves the life’ of a 60 year old patient who later dies at 90 years of age, then she hasn’t actually stopped the patient dying, but has extended the patient’s life by 30 years.

With this in mind, consider the recent research by a team from the Howard Hughes Medical Institute. They investigated the effects of a vast array of different chemicals on a test organism, the tiny nematode worm C. elegans. While many were found to be harmful, one chemical was greatly beneficial, significantly extending the worm’s short life span.

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