Thursday, October 23, 2014

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Hi there,

Helping patients with dementia will probably be one of the biggest human dignity issues of our century, as the proportion of elderly grows across the globe. It seems disgraceful to warehouse them in nursing homes, but often there are few alternatives.

So I was really delighted to see a ray of light in a new documentary, Alive Inside, which won the 2014 Sundance Film Festival Audience Award for an American documentary. It features the power of music to raise patients out of their torpor. Sometimes the effect of placing earphone and an iPod on an unresponsive patient slumped in a wheel is little short of miraculous.

One wonderful clip from the film features Henry, who spends his days in an almost catatonic state in a 600-bed nursing home. But once he began to hear the music from a favourite artist of his youth, Cab Calloway (famous for “Minnie the Moocher”), he begins to answer questions, his eyes light up and he even gives a short speech:

“It gives the feeling of love, romance! I figure right now the world needs to come into music, singing. You’ve go beautiful music here. Beautiful. Lovely. I feel band of love, of dreams. The Lord came to me, made me holy. I’m a holy man. So he gave me these sounds.

The film also critiques over-reliance on anti-psychotic medications for demented patients. “What we’re spending on drugs that mostly don’t work dwarfs what it would take to deliver personal music to every nursing home resident in America,” says Dr Bill Thomas, a gerontologist and advocate for long-term care reform. “I can sit down and write a prescription for a US $1,000 a month antidepressant, no problem. Personal music doesn’t count as a medical intervention. The real business, trust me, is in the pill bottle.” 

Obviously iPods and Cab Calloway playlists alone will not turn dementia around; the issue is far more complex than this. But this uplifting documentary at least shows that some simple solutions work.  


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Michael Cook
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This week in BioEdge

2014-10-15 2:27 AM
Italian nurse may have killed 38 nursing home patients
by | Oct 18, 2014 |
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tags: serial killers

A 42-year-old Italian nurse has been arrested over one death in a nursing home in the northern city of Lugo. But she is suspected of killing as many as 38 because they annoyed her. According to Italian media Daniela Poggioli even took selfies with some of the dead patients. “In all my professional years of seeing shocking photos, there have been few like these,” said Alessandro Mancini, the chief prosecutor of Ravenna.

The police investigation will be difficult, as the alleged method was an injection of potassium chloride, which is undetectable after a few days.

Some of Ms Poggioli’s colleagues suspected that something was wrong because so many patients were dying, far more above the average. She was also uncooperative and gave some patients laxatives just before the next shift to inconvenience other nurses. She also used to give patients sedatives to ensure that they would be quiet. 

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Swedes succeed in first womb transplant
by | Oct 18, 2014 |
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tags: Sweden, womb transplant

Doctors at the University of Gothenburg, in Sweden, have delivered the first baby to have been gestated in a transplanted womb. The child, a boy, is healthy and normally developed.

The goal of the Gothenburg project, headed by Professor Mats Brännström, is to enable women who were born without a womb or who have lost their wombs in cancer surgery to give birth to their own children.

Nine women in the project have received a womb from live donors – in most cases the recipient’s mother but also other family members and close friends. The transplanted uterus was removed in two cases, in one case due to a serious infection and in the other due to blood clots in the transplanted blood vessels.

The other women have in 2014 tried to become pregnant through a process where their own embryos, produced through IVF, are reintroduced to the transplanted uterus. Professor Brännström hopes that the remaining six women will also have successful pregnancies.

The successful delivery is considered a major step forward. “It gives us scientific evidence that the concept of uterus transplantation can be used to treat uterine factor infertility, which up to now has remained the last untreatable form of female infertility. It also shows that transplants with a live donor are possible, including if the donor is past menopause,” says Brännström.

Richard Smith, a gynaecological surgeon at Queen Charlotte's Hospital in London, has already applied to perform the procedure on five women. He says that he has a waiting list of 60 women.

As Dr Amel Alghrani, a law lecturer at the University of Liverpool, points out in BioNews, success could open up some ethical issues. What will happen when a male to female transgendered person asks for a womb transplant? “Once this occurs, by default, will we have discovered the science to achieve male pregnancy and the prospect of unisex gestation?” she asks. 

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Swedish feminists condemn surrogacy
by | Oct 18, 2014 |
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tags: surrogacy, Sweden

Swedish feminists have issued a policy paper condemning commercial surrogacy and calling upon their government to ban the practice. The Swedish Women’s Lobby (Sveriges Kvinnolobby) argues that surrogacy is a health risk and violates poor women’s human rights.

“Allowing surrogacy is to make use of women’s bodies and reproductive organs for the enjoyment of someone else, to the detriment of the woman herself. We premiere the right to bodily integrity and fundamental human rights over the right to children, which is in fact not a human right, but has been treated as such in the discourse on surrogacy. We renounce the view of a liberal market- approach to surrogacy and the right of the paying buyers which are [privileged] whilst women’s rights are negotiated.
“ … we are seeing a trend towards a dismantling of these fundamental rights in favor of the will and want of individuals to become parents in the name of their individual fulfillment. The issue of surrogacy has been treated within the discourse of reproductive rights and the means of childless parents to have a baby, when the human rights perspective is the only plausible in dealing with this issue. We find that the current investigation in Sweden is being issued on the wrong grounds and that the set of voices that are asking for an investigation are lacking a human rights perspective. We therefore call on the Swedish government to forbid surrogacy motherhood.
“An end needs to be put to the industry of surrogacy that reduces the female body to a container! Having a feminist approach to surrogacy means rejecting the idea that women can be used as containers and their reproductive capabilities can be bought. The right to bodily integrity is a right which should not be able to be negotiated by any form of contract. No matter the regulation or the nature of the contract, it still remains a trade with women’s bodies and with children. The rights of women and children, not the interest of the buyer, must be the focus of the debate surrounding surrogacy.”
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What do we do when biohazards are human?
by Xavier Symons | Oct 18, 2014 |
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tags: Ebola, quarantine

Bioethicists are debating the ethics of quarantine as governments around the world move to contain the spread of Ebola. The UN announced on Thursday that it is drafting guidelines to prevent human rights violations against people suspected of having Ebola. UN High Commissioner for Human Rights Zeid Raad al-Hussein cautioned against imposing criminal punishments on those who refuse isolation, saying that it might have the opposite effect.

A number of leading American bioethicists have defended the practice, arguing that it “takes precedence” over certain rights of the individual.

In a recent article in Time magazine, Art Caplan and Alison Bateman-House of NYU argued that freedom of movement must at times be restricted: “in the face of a threat of death, liberty can and should be, as we are watching in Dallas, limited so that you can’t move around freely and infect others.”

They did, however, stress the need to provide for the particular needs of different persons quarantined:  “If you are poor you are going to need more resources to get you through then if you are rich.”

Craig Klugman of De Paul University criticised the individualism of those who fail to voluntarily isolate themselves: “Why can’t people be trusted to do the right thing?...Has our worship at the altar of individualism gone so far that we are willing to spread a deadly disease to simply satisfy our desire for soup?” Klugman asks people to accept a program of voluntary isolation. When this fails duress may be legitimately used. 

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US officials try to hose down Ebola fears
by Xavier Symons | Oct 18, 2014 |
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tags: Ebola, hysteria, social psychology

As the Ebola outbreak grows in scale – with cases now reported in Spain and the US – experts are becoming increasingly concerned about public hysteria. According to a new Washington Post-ABC News poll, two-thirds of Americans are now worried about an Ebola epidemic in the US, and more than 4 in 10 are "very" or "somewhat worried" that they or a close family member might catch the virus.

Some experts see the next few weeks as crucial to containing mounting anxiety. “Officials will have to be very, very careful,” said Paul Slovic, president of Decision Research, a non-profit that studies public health and perceptions of threat. “Once trust starts to erode, the next time they tell you not to worry — you worry.”

DuPont, a company that manufactures protective suits, said it has more than tripled its production since the start of the outbreak in March. Kimberly-Clark, which also produces protective clothing, said it had seen a 20-30% rise in sales compared with this time last year.

Many elements of the Ebola threat are conducive to public hysteria, experts say. It is invisible and deadly – and this has been graphically illustrated through gruesome pictures reported home from Africa. It’s also a disease that personally we can do little to limit. 

In a speech on Wednesday, US President Barack Obama echoed countless healthcare officials and tried to allay public fears: “If we follow these protocols properly... the likelihood of widespread Ebola outbreaks in this country is very, very low”. 

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Bestiality to be banned in Denmark
by Xavier Symons | Oct 18, 2014 |
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tags: Animal rights, bestiality, Denmark

Denmark plans to ban bestiality – a practice that has long been illegal in other European nations. Danish food and agricultural minister Dan Jorgensen said that the practice was harming animals and damaging the country’s image. Speaking in an interview with Ekstra Bladet, a Danish tabloid, Jorgensen commented: “I have decided that we should ban sex with animals. That is happening for numerous reasons. The most important is that in the vast majority of cases it is an attack against the animals.”

“It is also damaging to our country's reputation to allow this practice to continue here while it is banned elsewhere”, he continued.

There has been a significant rise in underground animal sex tourism in Denmark since its neighbours Norway, Sweden and Germany outlawed bestiality. A recent Gallup poll revealed 76% of Danes supported a ban on animal sex.

Bioethicist Wesley Smith criticised the motivations behind the ban, saying that it failed to acknowledge the impact of the practice on human dignity:  “Bestiality is so very wrong not only because using animals sexually is abusive, but because such behavior is profoundly degrading and utterly subversive to the crucial understanding that human beings are unique, special, and of the highest moral worth in the known universe”. 

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A cool, rational analysis of egg freezing
by Xavier Symons | Oct 17, 2014 |
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tags: egg freezing, informed consent

With egg freezing rapidly becoming a fashionable reproductive option, the Harvard Law Review has published a survey article about the dangers of this form of fertility preservation. Barry University law professor Seema Mohapatra surveys the medico-ethical, legal and social complexities of egg freezing in an impressive literature survey entitled ‘Using Egg Freezing to Extend the Biological Clock: Fertility Insurance or False Hope?’.

Considering all the latest studies, Mohapatra argues that egg freezing needs to be treated with appropriate caution by medical practitioners and the general public.

Mohapatra discusses the scientific risks of freezing, emphasising that significant doubt remains about the safety of the procedure:  

“Although the American Society of Reproductive Medicine ('ASRM') removed the 'experimental' label from egg freezing, ASRM was careful not to endorse the practice. In fact, ASRM actually found a 'lack of data on safety, efficacy, cost-effectiveness, and potential emotional risks' associated with egg freezing. In addition, ASRM warned against the widespread use of egg freezing because it may 'give women false hope and encourage women to delay childbearing.'”

Mohapatra speculates about possible social pressures that could develop as egg freezing becomes more popular:

“I worry that if egg freezing is embraced by employers as a way to delay the 'opting-out' concept, those women who wish to have a child when they are younger may be seen as less committed and this reproductive 'option' may become more of a perceived requirement. To counter this concern, I suggest a more robust informed consent process, similar to the process used in research.”

Her chief recommendation is that doctors be required to provide more detailed information about the risks of the procedure to satisfy informed consent requirements:

“I argue that physicians should approach egg freezing for social reasons more as research than as treatment, and thus should be required to disclose that there are unforeseeable risks associated with the process.”

This is a highly useful resource for those trying to understand the various legal, ethical and sociological issues surrounding a new and increasingly popular form of reproductive technology. 

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OPINION: Egg freezing is a health risk
by | Oct 17, 2014 |
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tags: egg freezing, IVF

Responsible doctors should not be recommending egg freezing to perfectly healthy young women who have no medically indicated need. The dearth of evidence-based safety and efficacy data, combined with low numbers of live births resulting from egg freezing, do not justify broadening the application of the procedure to the general public at this time.

There is no long-term data tracking the health risks of women who inject hormones and undergo egg retrieval, and no one knows how much of the chemicals used in the freezing process are absorbed by eggs, and whether they are toxic to cell development. In addition, even with the new flash freezing process, the most comprehensive data available reveals a 77 percent failure rate of frozen eggs resulting in a live birth in women aged 30, and a 91 percent failure rate in women aged 40.

According to the Society for Assisted Reproductive Technology, for a woman age 38, the chance of one frozen egg leading to a live birth is only 2 to 12 percent. This is an important and significant finding given that the average age of nonmedical egg freezing customers in the US is 37.4. Worldwide in 2011, fewer than 10 babies were estimated to have been born from eggs frozen for women aged 38 and older.

The egg freezing guidelines issued by the American Society for Reproductive Medicine clearly state that egg freezing should only be used when there is medical need, such as women undergoing cancer treatments. Two years ago its practice committee reviewed 981 articles about egg freezing and found that only 112 had any relevant safety and efficacy data. Despite this shortage of quality research, it decided to remove the “experimental” label but stressed that “marketing this technology for the purpose of deferring childbearing may give women false hope.”

Samantha Pfeifer, committee chair at the time, was quoted as saying: “While a careful review of the literature indicates egg freezing is a valid technique for young women for whom it is medically indicated, we cannot at this time endorse its widespread elective use to delay childbearing. This technology may not be appropriate for the older woman who desires to postpone reproduction.”

Unfortunately, many irresponsible clinics have simply ignored these professional guidelines and are aggressively marketing the procedure to healthy young women. With the recommended three cycles plus storage fees topping out at about $22,000 or more, overselling the potential of egg freezing with phrases like “set your own biological clock” can be a lucrative endeavor, especially if companies like Apple and Facebook foot the bill.

Women and infants’ health is at stake when new infertility procedures are prematurely endorsed and promoted, and new strategies are needed to reign in rogue clinics that disregard the ethical code of “do no harm.” Perhaps it is time for external oversight of an industry that has thus far been unable to regulate itself.

Miriam Zoll is the author of Cracked Open: Liberty, Fertility and the Pursuit of High Tech Babies (2013) and a member of the board of Our Bodies Ourselves. This article was originally published the New York Times and is reproduced here with permission. 

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Michael Cook
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