Whole genome sequencing for infants needs careful study

Should whole-genome sequencing be used in public-health programs which screen newborns for rare conditions? That question is likely to stir debate in coming years in many of the 60+ countries that provide newborn screening, as whole-genome sequencing (WGS) becomes increasingly affordable and reliable.

Newborn screening programs -- which involve drawing a few drops of blood from a newborn's heel -- have been in place since the late 1960s, and are credited with having saved thousands of lives. Advocates of routine WGS argue that the new technology could help detect and manage a wider array of disorders.

But routine whole-genome sequencing raises ethical, legal and social issues that should be weighed carefully, according to an article by researchers at McGill University in the journal Science Translational Medicine. "Any change in newborn screening programs should be guided by what's in the best interests of the child," says Prof.… click here to read whole article and make comments


Nanny State and obesity #2: The importance of an equitable solution

What are the core values that we should uphold when implementing policy to address obesity? In a new article leading academics from the Johns Hopkins Berman institute of bioethics have explored this question in the context of consumption of sugar-sweetened beverages (SSBs). The ethicists identified fairness, consistency and the avoidance of stigmatization as the three necessary elements of any solution.

The ethicists drew connections and distinctions between the following three different ways of reducing SSB consumption: (1) restricting sale of SSBs in public schools, (2) levying significant taxes on SSBs, and (3) prohibiting the use of Supplemental Nutrition Assistance Program (SNAP; formerly food stamps program) benefits for the purchase of SSBs.

A ban on school sales of SSBs and, to a lesser degree, taxation of SSBs, score well in terms of fairness, the ethicists argue, as they apply across demographics, while the proposed food stamp ban targets SNAP participants exclusively. Such… click here to read whole article and make comments


Nanny state and obesity #1: Punishment doesn’t work

Peter Singer and Daniel Callahan have recently advocated radical approaches to reducing obesity. Singer argued for taxing overweight passengers on planes, whereas Callahan has proposed a system of stigmatizing the obese. An article in the latest edition of the journal Bioethics criticizes both these solutions.

University of Sydney academic Christopher Mayes argues that Singer and Callahan falsely assume that obesity is determined by the foolish decisions of autonomous individuals. Mayes refers to various studies that point to complex socio-cultural influences, rather than free choice, being at the heart of the obesity epidemic.

One leading researcher in the field, US academic Kelly Brownell, has written that "environmental conditions can override individual physical and psychological regulatory systems that might otherwise stand in the way of weight gain and obesity, hence undermining personal responsibility, narrowing choices, and eroding personal freedoms".

Similarly, peadiatrician and researcher Jennifer… click here to read whole article and make comments


Savulescu - We have a moral obligation to increase the intelligence of our children

Oxford bioethicist Julian Savulescu has again sparked controversy, this time advocating for the genetic screening of embryos and foetuses for intelligence genes.

In article published Wednesday in The Conversation, Savulescu referred to new research that identified specific genetic factors that contribute to low intelligence. A recent study, conducted by researchers from Cardiff University, showed that children with two copies of a common gene (Thr92Ala), together with low levels of thyroid hormone are four times more likely to have a low IQ.

If we screen our young for these predispositions, Savulescu claims, we might be able to address them before they have lasting effects on children's intelligences. "Given that whole genome analysis is likely to be used in the future, why not use the [predictive genetic] information that is available to try to at least start off with a higher chance of a… click here to read whole article and make comments


Australian judge warns of psychological effects of commercial surrogacy on children

An Australian judge recently expressed grave concerns about the effects of international surrogacy arrangements on children born through via the procedure. In a judgment that could have significant influence on future surrogacy rulings, Justice Paul Cronin of the Family Court of Australia warned that children could very easily encounter an identity crisis when they become aware that they were conceived via commercial surrogacy.

"A second reason why this Court needs to be cautious and scrutinise these arrangements carefully is the philosophical argument that children who are born to women under these circumstances can be seen to be either abandoned by their birth mothers or indeed crassly sold by their birth mothers. The Court is rarely given any information about the circumstances under which the child might otherwise live if it did not move from the birth mother to people such as the present… click here to read whole article and make comments


Doctors call for revision of baby organ donation rules

UK paediatricians want the government to allow “brain-dead” newborns to donate organs. An article in the journal Archives of Disease in Childhood claims that many young lives could be saved every year if the rules were changed. There is "significant uncapped potential" for newborn organ donation in the UK, they believe.

"For an infant awaiting a heart transplant, only a small-sized infant organ can be used, whereas as children approach adolescence, an adult organ becomes a viable option," the researchers say.

Under less rigid criteria in Europe, it is possible to transplant organs from new-born infants, so these are sometimes used in the UK. Dr Richard Kirk, a paediatric cardiologist told the BBC:

"They would be transplanted and home if the UK system was the same as in other countries around the world. There is a crazy double standard operating - it's forbidden… click here to read whole article and make comments


Nutrition and hydration often withdrawn without consent in Belgium

A recent study in the Journal of Medical Ethics has found that in Belgium decisions to withdraw artificial nutrition and hydration (ANH) rarely involve patient consent. The study, conducted by researchers from Brussels University and the University of Ghent, examined the circumstances of 6927 deaths in the country (about 12% of deaths in the year 2007).

Researchers found that in 81% of cases where artificial nutrition and hydration had been removed there had been no patient consultation. The reasons give for this were that the patient was demented (40%), unconscious (35%) or that the decision ‘was in the best interest of the patient’(8%). In lieu of patient consent the patient’s family was consulted and/or other physicians.

The researchers argue that patient consent is vital, and that a process of advanced consultation is necessary:

“The significance of these decisions calls for a model of decision making involving… click here to read whole article and make comments


Is advising people to kill themselves a case of free speech?

Former nurse William Melchert-Dinkel 

Egging people on to commit suicide can be regarded as free speech which is protected by the First Amendment of the US Constitution, the Minnesota Supreme Court has ruled. It has sent the case of former nurse William Melchert-Dinkel back to a district court judge to determine whether he should be tried for assisting suicide rather than just encouraging it.

The facts of the bizarre case are clear enough. In 2011 Melchert-Dinkel, a married father of two, was arrested after the suicides of 32-year-old Mark Drybrough in England, and 18-year-old Nadia Kajouji in Ontario. He had posed as a young suicidal female nurse in suicide chatrooms, given his victims detailed instructions, and encouraged them to enter suicide pacts with him. They were supposed to hang themselves while he watched on webcam. Apparently he had encouraged dozens… click here to read whole article and make comments


IVF consultation launched in Australia

Australia is to conduct a review of the ethics and clinical practice of assisted reproductive technology (ART). The National Health and Medical Research Council  will use feedback from the public in a review or current ART guidelines. No changes have been proposed yet. The deadline for submissions is April 30.

In most cases Australian regulations are fairly permissive and there seems to be little likelihood of imposing major restrictions. However, there are many areas which are puzzling and controversial even for people involved in the IVF industry.

Some topics on which the NHMRC invites comment are:

  • age limits on sperm donors
  • limits on the number of children sired by sperm donors
  • compensating egg and sperm donors
  • should donors be able to exclude certain clients such as lesbians, single mothers or ethic groups from using their sperm?
  • posthumous sperm donation
  • confidentiality about… click here to read whole article and make comments


New journal for law and bioethics

Three top US universities have combined with Oxford University Press (OUP) to start the world’s first journal devoted to advances at the intersection between law and bioethics. The Journal of Law and the Biosciences, an open access journal co-edited by academics from Duke, Harvard and Stanford Universities, aims to foster an interdisciplinary conversation between lawyers, bio-scientists, philosophers and other experts on controversial topics in bio-law. It will focus on cutting edge issues such as neurolaw and ethics, human enhancement, mass genetic testing and predictive analytics.

In an interview on the OUP blog, co-editor I. Glen Cohen of Harvard spoke of his excitement for the project:

“We are seeing major developments in genomics in neuroscience, in patent law, and in health care. We want to be at the forefront of this, and we think that a peer-reviewed journal led by the leading research institutions working in this area in the US is the… click here to read whole article and make comments


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