The parents of a young woman named Vickie Harvey, who tragically died at the age of 24 from acute myeloid leukaemia, have launched a campaign to give patients the right not to know that they are terminally ill. Eric and Lyn Harvey claim that their daughter lost the will to live when, after her leukaemia returned following a period of remission, doctors told her ‘in graphic detail’ how she would now succumb to her disease. Eric Harvey told the Daily Mail:
After [Vickie was about her prognosis] she changed – and never really got out of bed again. We knew she was dying, but we feel that, if she hadn’t been told that day, she would have lasted longer’. Continue reading
There are reports in the press this week that the remains of 86 unborn fetuses were kept in a UK hospital mortuary for months or even years longer than they should have been. The majority were fetuses less than 12 weeks gestation. According to the report, this arose because of administrative error and a failure to obtain the necessary permissions for cremation.
The hospital has publicly apologized, and set up an enquiry into the error. They are planning to cremate the remaining fetuses. However, they have decided not to contact all of the families and women whose fetal remains were kept on the basis that this would likely cause a greater amount of distress.
Is this the right approach? Guidelines and teaching in medical schools encourage health-care professionals and institutions to own up to their errors and disclose them to patients. Is it justifiable then to not reveal errors on the grounds that this would be too upsetting? How much transparency is desirable in healthcare?
Taking the popular over-the-counter pain and fever medication paracetamol during pregnancy might affect the unborn child more than we assumed – and hoped for. Recently, research began to link pre-natal exposure of paracetamol (also known as acetominophen) to asthma and poor motor and communication skills in small children. Now, a new study published yesterday suggests that taking paracetamol during pregnancy comes with an increased risk for the baby of developing attention deficit hyperactivity disorder (ADHD) later.
The authors of this study investigated 64,322 Danish children (born 1996-2002) and their mothers. The women were asked whether they have taken paracetamol in computer-assisted telephone interviews three times during their pregnancy and shortly after. To asses ADHD in children, the researchers used different ways: they asked the mothers of 7-year-olds about their child’s behaviour using a standardised ADHD questionnaire. Moreover, they used Danish medical registries to gain information about diagnoses of hyperkinetic disorder, which resembles a severe form of ADHD, and descriptions of ADHD medication to the children.
How the Danziger Story Advances the Abortion Debate in America: Actual Futures, Moral Status, and Common Ground
It has become commonplace in recent years to note that the ‘abortion debate’ in America has become entrenched. Indeed, there seem to be few issues in contemporary politics that elicit less common ground than the abortion debate finds in its stalwartly pro-choice and pro-life opponents. It is just as common, if not more so, these days to speak of the ‘attack on Roe v. Wade’ or ‘the attack on women’s rights,’ particularly in light of recent findings that more abortion restrictions were enacted between 2011 and 2013 in the U.S. than in the entire previous decade. Now more than ever, especially for the pro-choice movement, it is necessary to conceptualize novel approaches to the questions of the beginning, end, and quality of life that sit at the heart of the abortion debate. Here I examine a recent case and how it has the potential to advance this debate. Continue reading
Female genital mutilation (FGM) and male circumcision: time to confront the double standard
This month, the Guardian launched a campaign in conjunction with Change.org (the petition is here) to end “female genital mutilation” (FGM) in the UK—see Dominic Wilkinson’s recent analysis on this blog. I support this campaign and I believe that FGM is impermissible. Indeed, I think that all children, whether female, intersex, or male, should be protected from having parts of their genitals removed unless there is a pressing medical indication; I think this is so regardless of the cultural or religious affiliations of the child’s parents; and I have given some arguments for this view here, here, here, here, and here. But note that some commentators are loath to accept so broadly applied an ethical principle: to discuss FGM in the same breath as male circumcision, they think, is to “trivialize” the former and to cause all manner of moral confusion.
Consider these recent tweets by Michael Shermer, the prominent American “skeptic” and promoter of science and rationalism:
This sort of view appears to be common. One frequent claim is that FGM is analogous to “castration” or a “total penectomy,” such that any sort of comparison between it and male circumcision is entirely inappropriate (see this paper for further discussion). Some other common arguments are these:
Female genital mutilation and male circumcision are totally different. FGM is necessarily barbaric and crippling (“always torture,” according to Tanya Gold), whereas male circumcision is no big deal. Male circumcision is a “minor” intervention that might even confer health benefits, whereas FGM is a drastic intervention with no health benefits, and only causes harm. The “prime motive” for FGM is to control women’s sexuality (cf. Shermer in the tweets above); it is inherently sexist and discriminatory and is an expression of male power and domination. Male circumcision, by contrast, has nothing to do with controlling male sexuality – it’s “just a snip” and in any case “men don’t complain.” FGM eliminates the enjoyment of sex, whereas male circumcision has no meaningful effects on sexual sensation or satisfaction. It is perfectly reasonable to oppose all forms of female genital cutting while at the same time accepting or even endorsing infant male circumcision.
Yet almost every one of these claims is untrue, or is severely misleading at best. Such views derive from a superficial understanding of both FGM and male circumcision; and they are inconsistent with the latest critical scholarship concerning these and related practices. Their constant repetition in popular discourse, therefore—including by those like Shermer with a large and loyal audience base—is unhelpful to advancing moral debate.
‘Between the NHS and social care, there must be total commitment to ensuring that interaction is paperless, and that, with a patient’s consent, their full medical history can follow them around the system seamlessly.‘ So said Jeremy Hunt,the Health Secretary, on 16 January 2013. And NHS England say that: ‘Our vision is for a fully integrated digital patient record across all care settings by 2018’.
It sounds like a good idea. It’s not. Or not in its present form. Many of the concerns that have been expressed relate to privacy/confidentiality. Those concerns are real. But even if they can be satisfactorily addressed, electronic health records have the potential to do great harm. They divert attention from the patient to the screen, and they cause clinical skills to atrophy.
David Loxterkamp recently observed that the computer in the consulting room is a Frankenstein-like creature: ‘….we have created a place in our exam rooms for a computer that needs our care and feeding. It now directs the flow and purpose of an encounter that once unfolded organically according to the particular needs of the patient.’ The electronic servant becomes the master. Continue reading
Kyle Edwards, Uehiro Centre for Practical Ethics and The Ethox Centre, University of Oxford
Caroline Huang, The Ethox Centre, University of Oxford
On November 22, in a harshly worded “warning letter,” the US Food and Drug Administration (FDA) informed the direct-to-consumer genetic testing (DTC-GT) company 23andMe that it had 15 working days to discontinue marketing of its services. By December 5, 23andMe had canceled television, radio, and online advertising and stopped selling its $99 ‘spit kit’ DNA test online.
To put it mildly, the FDA and 23andMe have some communication issues to resolve. A working relationship dating back to 2008 appears to have soured after a six-month period of silence from 23andMe, prompting the warning letter and causing many observers to comment on the apparent stupidity and mystifying nature of 23andMe’s communication ”strategy.” While the FDA’s letter is quite clear that 23andMe must communicate better, particularly in reporting the accuracy of its tests, it is not at all clear on how the FDA plans to regulate companies like 23andMe after these accuracy results are in. Moreover, it hints strongly that some tests may be banned even if they are as accurate as the tests you could receive through a physician.
Assuming 23andMe follows through on its promise to cooperate with the FDA, how exactly should these DTC-GT services be regulated to best serve the public?
Next week, thousands of final year medical students will sit a Situational Judgement Test (SJT) as part of the application for their first medical jobs. This will be the second year that the Foundation School Application System (FPAS) has used the SJT, which was developed by the Improving Selection to the Foundation Programme group (ISFP), and replaced the resource-intensive and perceived-unreliable short-answer questionnaires of the previous application process. Continue reading