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Expert advice

Last Friday, on BBC Radio 4’s Any Questions?, one of the questioners picked up a theme that had appeared many times in the media during the week.  ‘What is the point’, he asked, ‘of asking for advice from an expert independent panel of advisers and then disregarding it?’. 

He was referring to leaked information that the government’s  Advisory Commission on the Misuse of Drugs was going to recommend that cannabis should retain its current status as a class C drug, but that the Prime Minister was nevertheless ‘minded’ to restore its former B classification.  Class B drugs are regarded as more serious than those of class C, carrying a five year maximum prison sentence for possession, as opposed to the current two years. 

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Helping human-animals to die

A French woman, Chantal Sebire with a disfiguring and painful terminal
illness recently failed in her appeal for medical assistance to help
her to die. Before her death Chantal Sebire was quoted as saying “We
wouldn’t let an animal go through what I have had to endure”(1).
Euthanasia for animals is commonplace, and is widely accepted as a
morally acceptable response to animals whose suffering is unable to be
relieved. But, with the exception of a few places such as the
Netherlands, Belgium and the US state of Oregon, euthanasia for humans
is legally prohibited.
But is it speciesist to make a distinction between animal and human
euthanasia? In the case of terminally ill humans who request medical
assistance in dying we may have more reasons to permit euthanasia than
in the case of animals. If the arguments against euthanasia are so
forceful that it should not be permitted even in tragic cases like that
of Chantal Sebire should animal euthanasia be prohibited?

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Junk science reporting

Science constantly gives rise to new information, new technologies, and new ethical dilemmas. To keep abreast of such changes, we need good science reporting in the newspapers, television and online. However there is a fundamental disconnect between the way science works and the way the media works which leads to big problems in mainstream science reporting. This is excellently illustrated by two of today’s news stories.

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PatientsLikeMe.com

The New York Times recently published a feature article on a website called PatientsLikeMe. This is an online community like facebook or MySpace, but with a medical twist. The members have serious medical conditions, like Parkinson’s disease, multiple sclerosis, or HIV, and they use site to post quantitative information about their treatment and symptoms. The site then presents this information for all to see. For example, users can search the website for a drug and then view bar graphs illustrating reasons that members take the drug, the distribution of dosages, length of treatment, reasons for stopping treatment, and patient ratings of the treatment. Individual profiles also show line graphs plotting disease progression and showing major treatment events. The aim is to offer patients the information required to better tailor their own treatment.

It’s easy to think of both risks and benefits of this sort of website.

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Are artists, writers, sportsmen, academics, scientists, politicians, and businessmen addicts?

Various news sources
this week, including Fox News and The Guardian, are reporting on an editorial published in this month’s American Journal of Psychiatry. In it, the author, Jerald J. Block, argues
that internet addiction is a real psychological disorder, and that it ought to
be recognised as such in DSM-V, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, which is
currently being compiled by the American Psychiatric
Association.

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A National Health Database

      The Australian Federal Health Minister Nicola Roxon has announced plans for a national health database. According to a report in The Australian today, the current version of these plans includes enabling patients to look up mortality rates for surgeons as well as rates of hospital-acquired infections and readmission rates. This development is seen by many as a response to a series of recent medical scandals in Australia, most notably the ‘Dr Death’ scandal at Bundaberg Base Hospital in Queensland. Predictably the Australian Medical Association is opposing these changes. Their reaction has been slammed by the Australian nurses union who have accused medical staff of ‘closing ranks over rogue surgeons’, according to Samantha Maiden, writing in The Australian.

    The current Australian Government proposal is far reaching but it is far from groundbreaking. It follows in the footsteps of similar proposals that have been implemented in the United Kingdom, over the past ten years, as well as some American precedents. Comparative cardiac surgeon’s performance data has been published on the internet by the United Kingdom Healthcare Commission since 2006. Visitors to http://heartsurgery.healthcarecommission.org.uk/ can discover survival rates for coronary artery bypass grafts, aortic valve replacement surgery, and for all forms of heart surgery, for individual surgeons working at surgical units across the United Kingdom.

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Adoption and the golden rule

In a recently published book, ‘When the Bough breaks’, Julia Hollander
describes her difficult decision to give up her severely disabled
daughter Imogen to foster care. Her decision has been roundly
criticised by some, who have described her choice as ‘selfish’ and
‘monstrous’.

We have good reason to admire parents who are able to care for children
like Imogen. The challenges that they face are enormous, and the
personal sacrifices that they make are often extraordinary. But should
we demand parents sacrifice their own interests, those of their other
children and their partners? What weight should we put on the interests
of future children – who would not be born if the parents continue to
care for this child?

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Is it Wrong to Deliberately Select Embryos which will have Disabiltites?

A current bill before Parliament would revise the current regulation of IVF. One clause has caused great debate, especially amongst people with disabilities. It states:

(9) Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—

(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.

Some people with disabilities like deafness or dwarfism wish to use IVF to select embryos with the same disabilities. For reports of such cases, see Sanghavi, D. M. ‘Wanting Babies Like Themselves, Some Parents Choose Genetic Defects’, The New York Times, (December 5, 2006).

According to a recent survey, deliberate selection of children with conditions such as deafness or dwarfism is not uncommon: 5% of 190 of PGD clinics surveyed in the US have allowed parents to select embryos with conditions commonly taken to be disabilities (See Baruch, S. Kaufman, D. and Hudson, K. L. ‘Genetic testing of embryos: practices and perspectives of U.S. IVF clinics’ Fertility and Sterility (2006).)

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Methuselah’s planet: the population cost of longer life

Ageing is a mysterious process. There is a good deal of ongoing research aimed at trying to understand its biological cause, though much remains unknown. Some research is aimed at trying to unlock longevity, for example a study published this week that found a particular gene mutation in a group of long-living Ashkenazi Jews. Other researchers are actively looking at rare diseases like progeria which lead to accelerated ageing. It is often expressed that such research will make it possible to extend the normal human lifespan.

But should we try to make our lives longer? In an era of increasing environmental awareness, when the costs of human overpopulation are all too clear it might be argued that the planet cannot support a significant increase in our lifespan.

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Doublethink and double effect; donation after cardiac death

In California a transplant surgeon has been charged with a felony in relation to the death in intensive care of a young disabled man (Ruben Navarro). (See also Matthew Liao’s blog from yesterday). Ruben had a severe degenerative disorder of the nervous system known as adrenoleukodystrophy, and had then suffered further brain damage after a respiratory arrest. The surgeon is accused of administering drugs to hasten Ruben’s death so that his organs could be used for transplantation. In the event Ruben’s death took some 8 hours after removal of life support, and none of the organs could be used.

What happened after Ruben Navarro’s life support was removed remains unclear. However this case highlights some of the problems of conflicting intentions when patients are allowed to die.

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