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  11:45:00 PM

UK scientists call for debate on designer babies

Novel techniques of editing the genome have inspired some British scientists to call for a public debate on designer babies. Dr Tony Perry, of the University of Bath, recently announced that his team had successfully edited mouse DNA at the moment of conception. Using “Crispr” technology, it will be possible to delete and insert DNA in human embryos. "There's much speculation here, but it's not completely fanciful, this is not HG Wells, you can imagine people doing this soon [in animals],” he told the BBC. "At that time the HFEA [the UK's fertility regulator] will need to be prepared because they're going to have to deal with this issue."

Changing the DNA could remove genetic diseases from a bloodline, but it would also be genetic engineering.  "Obviously in the UK, this is not allowed and there would have to be a change in regulations, which I suspect would have enormous problems,” Professor Robin Lovell-Badge, of the UK Medical Research Council, said. "But it is something that needs to start to be debated. There has been a blanket ban on germ-line therapy, so there needs to be a debate about that and some rational thought rather than knee-jerk reactions that, 'No you can't possibly do that.'"

A spokesman for the UK's Human Fertilisation and Embryology Authority commented: "We keep a watchful eye on scientific developments of this kind and welcome discussions about future possible developments."

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  11:38:00 PM

The ethics of skin colour stereotypes

At the intersection of marketing and bioethics is the issue of perpetuating racist stereotypes. In many countries, especially South Asia, a preference for lighter skin predates European colonialism. By some estimates the “fairness market” in India for both men and women is worth more than US$500 million. Matchmaking sites often mention “wheaten skin” as a desirable feature of a prospective soulmate.

Unilever’s Fair & Lovely is the market leader in India. Overseas brands are pushing similar products: L’Oreal’s White Perfect Deep Whitening Double Essence, Revlon’s Absolute Whitening Skin Care Range, Estee Lauder’s White Light, Yves St. Laurent’s Blanc Absolute Serum, Elizabeth Arden’s Visible Whitening Pure Intensive and so on. The Vaseline brand created a controversy with a Facebook widget which allowed users to lighten their complexion.

Marketing academics from the University of Hull Business School in the UK and James Cook University in Australia have questioned the ethics of these products in a recent paper. They claim that there are significant safety issues with these skin lightening products. While most tout the power of vitamins, many contain high levels of mercury. Another dangerous agent is hydroquinone, which can be carcinogenic.

The products are popular and their manufacturers claim that they are harmless. However their critics claim that there is social harm:

Advertisements in all the countries in which Fair & Lovely is sold show product users getting better jobs, getting married or having a brighter future (and being noticeably happier) as a result of their lighter skin. The primary target market is women aged 18 – 35, with the poor being a significant segment. There are reports of girls aged 12 – 14 using the product, which is marketed in ‘affordable’ small packages. Critics have claimed that the ads are socially objectionable, racist, demeaning or even ‘repellent’. Two ads have been taken off air in India as a result of protests, but others are still running.

However, demand is strong for the products. “The company is marketing a legal product, it is not breaking any laws, and it appears to have a loyal customer base, but can it claim to be doing good while it does well out of sales of the product?” The academics leave the question unanswered.

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  11:15:00 PM

Physician assisted death versus palliative care

Arguments against physician assisted suicide and euthanasia often turn on a claim about the need prioritize the development of adequate palliative care. A new article in the Journal of Medical Ethics provides a sophisticated critique of this archetypal argument.

Joaquín Barutta (Ruhr University, Germany) and Jochen Vollmann (Italian Hospital University, Argentina) discuss a number of variants of the ‘argument from palliative care’ – the view that the existence (or, in some cases, the non-existence) of palliative care means that we should not allow physician assisted death (PAD). Barrutta and Vollmann claim that each variant of the position is flawed.

One formulation, sometimes put forward by more cautious pro-euthanasia advocates, is that a lack of available palliative care limits a patient’s autonomy. If a patient does not have all the options available to him, then how can he make a truly free decision? Barutta and Vollmann respond by arguing that ‘autonomy’, even in situations where palliative care is not available, is still present.

"Certainly, a lack of better options limits the choices a person has available. However, an autonomous decision is not the same as a decision after trying all other options… All we should require is that their choice is the result of correctly applying the skills needed to make a decision based on their own values and beliefs."

Barutta and Vollmann continue from this claim to discuss the second variant of the position, ‘the argument from existing alternatives’. Some would argue that patients should try all existing alternatives first before opting for euthanasia. The authors respond:

“we interfere with the autonomous decision of these patients to request PAD that we have discussed previously. Since doing so results in more suffering, it is hard to see how this could be justified using this argument.”

The authors also discuss the claim that PAD will be used primarily by those from low socio-economic backgrounds, precisely those social classes lacking adequate palliative care. They put forward the following rejoinder:

“PAD derive from lack of economic resources to get better care, forbidding PAD does nothing to help these patients. On the contrary, as already noticed when analysing the previous argument, it reduces their options even more, condemning many of them to a worse death.”

It strikes this writer that the oft-made argument from ‘lack of autonomy’, though not without promise, needs to be revisited if it is to address Barutta and Vollmann’s critique.  

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  11:03:00 PM

Creation: a product for the masses?

What if we could democratise creation?

This may sound like a pretentious thought from a sci-fi movie, but one San Francisco geek believes we can make it a reality.

Austin Heinz, the founder of the start-up Cambrian Genomics, dreams of a future in which customers tinker with the genetic codes of plants and animals and even design new creatures on a computer.

In a makeshift laboratory in San Francisco, his synthetic biology company uses lasers to create custom DNA for major pharmaceutical companies. The synthetic biology is nothing new – what’s novel is Heinz desire to make the technology cheap, fast and affordable, such that private users can take advantage of it.

Anyone in the world that has a few dollars can make a creature, and that changes the game,” Heinz said. “And that creates a whole new world.”

The 31-year-old CEO has managed to attract over $10 million in support an investments from Silicon Valley venture capitalists. A significant amount has come from Peter Thiel’s venture firm Founders Fund. 

Venture capitalist Timothy Draper, an investor in the company, expressed his enthusiasm for the project: “I love Cambrian,” he said. “The company is literally printing life. Can’t wait to see all the great things that come of it.”

Understandably, bioethicists have reservations. It is still unclear whether the company has adequate security measures to prevent customers from requesting dangerous DNA sequences. And the hubris of the Heinz’s rhetoric has some ethicists alarmed. Marcy Darnovsky, executive director of the Center for Genetics and Society, a bioethics watchdog group in Berkeley, described Heinz’s belief that “every problem can be solved by engineering” as a kind of “techno-libertarianism.”

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  11:00:00 PM

US Supreme Court to debate the use of new three-drug execution method

The Supreme Court of the United States has agreed to hear a case about the constitutionality of a new execution method being used in Oklahoma's correctional facilities.

Due to a shortage of customary execution drugs, Oklahoma's authorities are using a new combination of barbiturates to execute prisoners. The combination involves the drugs midazolam, intended to cause unconsciousness, rocuronium bromide, which works as a paralytic, and then potassium chloride that serves as a heart-stopping agent.

In the case Glossip v. Gross, No. 14-7955, three Oklahoma inmates are claiming that the new procedure violates the eighth amendment. They argue that it poses a significant risk of 'terrible suffering'.

Motivation for the case has come in part from the botched execution of Joseph Rudolph Wood in Arizona last July.

Medical experts testifying on behalf of the inmates at an evidentiary hearing said the effects of high doses of midazolam, which Oklahoma adopted, were too unpredictable to justify its use. They reminded the court that FDA has not approved the use of midozolam as a general anaesthetic in clinical practice.

The case is likely to appear before the Supreme Court this term.

“Petitioners are pleased that the Supreme Court will review their case,” said Dale Baich, one of the attorneys representing the death row inmates. In a statement, Baich said that the protocol is “not capable of producing a humane execution, even if administered properly.”

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  10:46:00 PM

China’s gender imbalance “most serious and prolonged in the world”

China has by far the greatest gender imbalance of any nation in the world, with conservative estimates from 2014 putting the ratio at 115.8 males to every 100 females.

The peak body responsible for family planning in the country, the National Health and Family Planning Commission, this week made its strongest statement yet on the crisis.

In a document published on the commission’s website, officials wrote, “China's sex imbalance problem among newborns is the most serious and prolonged in the world and the population it affects is the greatest”. They noted that there are over 33 million more men than women in the country.

Statistics published by the commission, suggest that the ratio has dropped from 121.18 in 2014 to 115.8 last year. Nevertheless, as the commission itself admits, “the gender ratio at birth is still dangerously high”.

There is an extant domestic ban on the use of blood testing to determine the sex of a fetus, but many Chinese couples are attempting to send their blood samples out of the country to be analysed by overseas agencies. In their statement last week, commission officials vowed to crack down on the practice, and reminded medical staff that carrying, mailing or transporting blood samples abroad is illegal.

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  12:33:00 AM

Dutch euthanasia clinic has knuckles rapped over tinnitus death

A Dutch end-of-life clinic has been reprimanded for the third time in a year for moving the goal posts for euthanasia. The Levenseindekliniek in The Hague helped a woman to die because she complained of severe tinnitus, or ringing in the ears. An independent review commission conceded that tinnitus could satisfy the criteria for legal euthanasia, but said that the clinic should have referred 47-year-old Gaby Olthuis, a mother of two, to a psychiatrist. The other two complaints concerned an elderly woman who did not want to enter a nursing home and an elderly psychiatric patient.

The symptoms that Ms Olthuis claimed to have were severe: she constantly heard the sound of screeching metal and even the rustle of opening a plastic bag hurt.

Levenseindekliniek opened in 2012 for patients who could not find a doctor who agreed to euthanase them. Since then they have helped about 250 people to die. The director of the clinic, Steven Pleiter, said that he was exasperated by the reprimand. "We try to help people and do it in a very precise and careful manner. We find it annoying that we now have to deal with this for the third time."

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  12:24:00 AM

French parliament begins debate on euthanasia

The French parliament opened a long-awaited debate on euthanasia this week. President Francois Hollande and the prime minister, Manuel Valls, both support liberalising the law at least to allow terminal sedation “to allow people to depart peacefully and without suffering”.

A letter arguing against the proposal appeared in Le Figaro this week signed by 23 members of parliament.  

“At a time when our country is debating how to live together, it is unacceptable to open the door to a right to death, which does not come under the law. Far from being the ultimate freedom, the choice of euthanasia assumes the alienation of the individual to his pain. The solution is certainly not to destroy life to eliminate suffering, but rather to seek ways to ease pain and, to the extent reasonably possible, to protect life.”
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  7:32:00 PM

Thailand to have ‘third gender’ in new constitution

Thailand is poised to recognise a third gender in its new constitution, with the constitutional drafting panel saying on Thursday that “Thai society has advanced”.

The panel, composed of members handpicked by the ruling junta, said that “there are not only men and women”, and that there is a need to recognize all genders.

“We need to protect all sexes – we consider all genders to be equal”, panel spokesman Kamnoon Sittisamarn told journalists.

The panel will send details of the measure to the National Reform Council by April. It will need to be formally approved by the ruling junta, also known as the National Council for Peace and Order.

Thailand has a significant LGBT community, with homosexual, transgender and transsexual people playing a prominent role in the country’s entertainment industry.

In 2012, a group of lawmakers and LGBT activists formed a committee to draft legislation recognizing same-sex couples that would, among other things, enable them to marry.

But discussion of the draft law was put on ice while Thailand struggled with political protests in 2013 and 2014.

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  7:20:00 PM

Don’t shoot the messenger

Should we always blame the journalist for poor science reporting? Perhaps not, according to a recent paper published in the British Medical Journal.

The article, written by a team from Australian and British Universities, found a direct correlation between ‘exaggeration’ in academic press releases and overstatements in popular media.

The stated aim of the study was to examine ‘the association between exaggeration in health related science news and academic press releases’. Researchers analysed over 400 press releases produced by UK Universities, as well as 600 associated news articles, for ‘exaggeration’ (defined as claims going beyond those in the peer reviewed paper).

The researchers found a direct correlation between exaggeration in academic press releases and journalistic exaggeration. The majority of news articles made ‘exaggerations’ when they were based on press releases that gave health advice to readers that didn’t follow from the study; made unjustified ‘causal claims’; or made inferences about humans from studies concerned with other animals.

In contrast, only 10-18% of media reports contained ‘exaggerations’ when based on ‘objective’ press releases.

In an editorial on the study, Dr. Ben Goldacre – a researcher fellow at the London School of Hygiene and Tropical Medicine – suggested that there is a need to achieve more accountability for poorly written scientific press releases. “All academic press releases should have named authors, including both the press officers involved and the individual named academics from the original academic paper.” He also called for press releases to be “treated as a part of the scientific publication, linked to the paper, referenced directly from the academic paper being promoted, and presented through existing infrastructure as online data appendices, in full view of peers.”

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