Practical Ethics

Eugenics or 'reprogenetics'? Call it what you will, but let's do it

As The Times recently reports:

 

“British couples are to be offered a groundbreaking genetic test that would virtually eliminate their chances of having a baby with one of more than 100 inherited diseases. The simple saliva test, which identifies whether prospective parents carry genetic mutations that could cause life-threatening disorders such as cystic fibrosis, spinal muscular atrophy or sickle-cell anaemia in their children, is to be launched within weeks in Britain... If the procedure, which will cost about £400 per person or £700 for a couple, is widely adopted, it could dramatically reduce the incidence of 109 serious inherited conditions that collectively affect one in every 280 births.”

 

Surely we should be delighted at such great news? Surprisingly, not everyone agrees. Some experts object that the test, devised by the Californian company Councyl, could lead to “back door eugenics”. They also argue that the diseases it detects are too rare for most people to need screening, and that it will cause needless alarm. Finally, they fear that it will raise demand for embryo screening and abortion.

 

What is the most moral way to use embryos?

By: Francesca Minerva

Reading this news  about a couple that donated two embryos to another sterile couple, I started to ask myself if embryo donation is really the most moral way to use embryos. Some people, indeed,  suggest that this choice is the one that people who take into account human life should take. We read “The concept of donating embryos to other couples got a push eight years ago under President George W. Bush, who dedicated federal funding to promote, in his terms, “embryo adoption.” The federal funding has since increased to $4.2 million. Now, Georgia has passed the nation's first state law symbolically recognizing embryo adoption”. I am especially skeptical about two issues connected to embryo donation.

Ending It, in Paternia

In the Republic of Paternia there has, of late, been a vigorous debate on the question of whether the law should change to permit marital separation in some circumstances. Some desperate Paternian couples have been illegally travelling abroad to engage in marital separations in Switterland (where they are permitted for now, though the Switts are becoming uncomfortable with their country’s renown for so-called “separation tourism”). Some of these couples have been dragged through the Paternian courts on their return. Sympathetic juries have often chosen to acquit, recognizing that their situations had become unbearable, that they had separated consensually, and that legal enforcement of their cohabiting marital relationship would only have prolonged their suffering. Moreover, prosecutors in Paternia have for a long time only selectively prosecuted cases of marital separation that illegally took place abroad.

Renaming a Disorder

What’s in a name? Quite a lot, considering the huge commotion over proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM). Almost a thousand pages long, this psychiatric bible is used all over the world to classify and diagnose mental patients – it’s the definitive authority on that nebulous concept known as “normal”. The implications of any revisions are tremendous, and the American Psychiatric Association, publisher of the manual, has attracted support as well as harsh criticism. Could these revisions actually cause more harm than good? I’m not sure, but I want to explore the implications of just one of the proposed revisions – that concerning EDNOS, or “Eating Disorders Not Otherwise Specified.”

The worth of a life and a life worth living

There has been a lot of discussion about health care rationing in the North American media over the last year, much of it hysterical and barely coherent. A number of respected ethicists have tried to make the case for rationing, including Peter Singer in the New York Times last year, and recently John Freeman.

This week Newsweek Science Editor Sharon Begley asked ‘What is a Life Worth?’ drawing on a recent study presented at the American Society for Maternal-Fetal Medicine meeting. Begley noted

“This is the kind of news that unleashes hysteria about "death panels" and "health-care rationing," but here goes: an analysis of genetic screening for an incurable, untreatable disease called spinal muscular atrophy shows that it would cost $4.7 million to catch and avert one case, compared with $260,000 to provide lifetime care for a child born with it. So here's the question: do we say, "Damn the cost; it is worth any price to spare a single child the misery of being unable to crawl, walk, swallow, or move his head and neck"—or do we, as a society, put on the green eyeshades and say, "No, sorry, we can't afford routine screening"?”

Obesity and Responsibility

There has been a good deal of discussion about obesity recently, since the Royal College of Surgeons criticized access to weight loss operations in the UK as a ‘postcode lottery’: http://www.guardian.co.uk/commentisfree/2010/jan/21/morbid-obesity-gastric-bands-nhs-costs

One common response – for example by Catherine Bennett in The Observer (  http://www.guardian.co.uk/commentisfree/2010/jan/24/homeopathy-obesity-gastric-bands ) has been that the question of unfairness shouldn’t be permitted to arise in the first place. Obesity, since it is self-inflicted, should not be treated by the NHS at all. Rather, the money should be spent on treatments for involuntary ailments, such as cataract operations or hip replacements.

Against this, it could be argued that interventions to cause weight loss, such as gastric bands, are in fact a highly effective use of NHS resources, since (a) they tend to work pretty well and (b) they save the costs of further treatment down the line for conditions which would otherwise have been caused by the obesity. This argument, however, fails to deal with the original deflection of responsibility for obesity onto the sufferers themselves. If they bring obesity on themselves, which then gives rise to further medical problems, then plausibly they have brought those problems on themselves as well. The NHS should refrain from treatment throughout.

The Disease Industry

In a recent article, “Sure, It’s Treatable. But Is It a Disorder?” the New York Times warns its readers to “brace yourselves for P.E. – shorthand for premature ejaculation”. If the pharmaceutical industry is to be believed, that may not be bad advice, since according them, “One in three men actually have the condition.” But the advice is not meant to be taken literally. What the reporter really meant was, “brace yourselves for ‘P.E.’ – shorthand for ‘premature ejaculation’”.  According to the article, just as the makers of Viagra have in recent years introduced into the popular lexicon the name of a “modern man’s malady” and it’s acronym – ‘erectile dysfunction’, or ‘E.D.’, we can expect a similar effect as a result of the development and marketing of Priligy: a new pill for “men who ejaculate before copulating or within seconds of beginning.”

The interesting thing about drugs like these is that the condition that they address may not be recognized as a “disease” or “medical disorder” until the drug companies set out to market a “cure” for it. And medicalizing the issue is an essential part of the drug marketing strategy.

We're all guinea pigs, and it's not so bad

The outrage provoked by Professor Anthony Mathur’s suggestion that patients should sometimes be obliged to enrol in clinical trials (discussed already on this blog by Steve Clarke: 11 December) continues to rage on.  Armies of shrill autonomists tell us that all our worst nightmares are real: that Mengele walks again.

Second-hand and second-class organs. Should the patient know?

In a urology journal this month American surgeons describe transplanting kidneys that would previously have been rejected as unsuitable. In each case the donor kidneys had been found to contain a solitary mass during the transplant work-up that was potentially cancerous. Rather than cancelling the donation the surgeons removed the kidney, cut out the tumour, and then transplanted the tumour-free organ. This follows reports from a couple of weeks ago that surgeons are increasingly using ‘risky’ organs from donors who are elderly or who have other serious illnesses.

Diluted evidence: is there anything special with homeopathy?

Last week I participated in the Royal Society MP-Scientist Pairing Scheme where I got a chance to see Westminster from the inside. I was lucky to end up listening to a hearing in the Parliamentary Science and Technology Select Committee about whether the government was really pursuing evidence based medicine when it funds homepathic medicine through NHS and makes MHRA decisions for homeopathy pills. Ben Goldacre was there and has of course written eloquently about the whole thing. While Booths at least admitted they selling the remedies because they made money from them, the proponents tried both to claim clear results in their favor, that statistical measurement methods did not work and that placebo had nothing to do with what they are doing. A particular howler was how one speaker argued that homeopathy should be respected for its 200-year long history, yet it was "still early days" for explaining how or if it worked.