Thursday 30th June 2016- The Guardian: Couple win legal battle against ruling on dead daughter’s eggs

‘A 60-year-old woman who wants to use her dead daughter’s frozen eggs to give birth to a grandchild has won a legal battle over what constitutes medical consent.

The court of appeal has ordered the Human Fertilisation and Embryology Authority (HFEA) to reconsider the application, opening the way for fertility treatment in the United States.

The woman, whose daughter died of bowel cancer in 2011, had asked three judges to allow her to carry out the dying wishes of her “much-loved and only child”. The family have remained anonymous; the court identified the mother as Mrs M.

Her daughter, who was 28 when she died, spent most of the last five years of her life in hospital. She wanted to have IVF treatment but became too ill. At one stage, she suggested having her ovaries transplanted into her mother. Three eggs were eventually removed and stored.

The legal problem the HFEA confronted, the judgment explained, “was that while [the daughter] consented to treatment for egg removal and storage (including storage after her death) and also to the use (other than for research purposes) of her eggs after her death, she never completed any form giving details of the precise use that is now proposed”.

Lawyers for the mother and her husband, referred to only as Mr M, said that if they did not overturn the refusal for treatment, the eggs would be allowed to perish.

Giving judgment, Sir James Munby, who is president of the family division of the high court, Lady Justice Arden and Lord Justice Burnett granted the parents’ appeal. Neither Mr or Mrs M were in court for the ruling.’

‘The judges heard that the daughter, referred to only as A, was desperate to have children and asked her mother to “carry my babies”. Her parents launched legal action against the HFEA’s refusal in September 2014 to allow them to take their daughter’s eggs to a US fertility treatment clinic to be used with donor sperm.’

‘The court’s role, however, was not to decide whether it would have permitted the mother to undergo fertility treatment using her deceased daughter’s eggs and donated sperm.

Its task was to determine whether Mr Justice Ouseley erred in concluding that the HFEA’s statutory approvals committee acted lawfully and rationally in exercising its broad discretion to refuse to authorise export of the frozen eggs.

Giving the court’s ruling, Lady Justice Arden said the challenge succeeded at three levels: “First, there was on the face of it the misstatement of certain of the evidence about [the daughter’s] consent by the [HFEA] committee.

“Second, even if what the committee meant was that there was a lack of effective consent because the appellants could not show that [the daughter] received information on certain matters, the decision was flawed because the committee pointed to the lack of certain evidence without explaining why [she] needed to receive that information and give that consent.

“The third level is that the committee did not ask the prior question of what information the Human Fertilisation and Embryology Act required to be given to [the daughter] in the circumstances of her case.”

The judge said the decision must be set aside and remitted to the statutory approvals committee of the HFEA for further consideration of the export application.’

Related Articles:

Couple win legal battle against ruling on dead daughter’s eggs- The Guardian

Woman wins appeal to use dead daughter’s eggs- BBC News

 

Monday 9th May 2016- The Guardian: London HIV clinic fined £180,000 for revealing service users’ names

‘An NHS clinic in London has been fined £180,000 for a serious breach of the privacy of more than 700 users of an HIV service.

Patients and service users who were on the HIV clinic email list of 56 Dean Street, a Soho-based sexual health clinic, said at the time of the breach they were terrified it could leave them open to blackmail or public outing.

A staff error meant anyone receiving the September newsletter from the service could see the email addresses of all the other recipients.

Addresses had been wrongly entered into the “to” field instead of the “bcc” field, and 730 of the 781 email addresses contained recipients’ full names. Most of the recipients were HIV positive though a small number were not.

Chelsea and Westminster hospital NHS foundation trust, which runs the clinic, has been fined £180,000 after the Information Commissioner’s Office (ICO) found there had been a serious breach of the Data Protection Act, likely to have caused substantial distress.

The information commissioner, Christopher Graham, said it was “clear that this breach caused a great deal of upset to the people affected”.

Graham said the investigation revealed many people recognised other names on the list of recipients, because the clinic served a small area of London, and feared their own name would be recognised too.

The ICO investigation found the trust had previously made a similar error in March 2010, when a member of staff in the pharmacy department sent a questionnaire to 17 patients in relation to their HIV treatment. After the mistake, extra measures were put in place but no specialist training was implemented, the ICO found.

“The trust was quick to apologise for their mistake, and has undertaken substantial remedial work since the breach,” Graham said. “Nevertheless, it is crucial that the senior managers at NHS trusts understand the requirements of data protection law, and the serious consequences that follow when that law is broken.”’

Related Articles:

London HIV clinic fined £180,000 for revealing service users’ names

NHS trust fined for 56 Dean Street HIV status leak- BBC News

Monday 1st February 2016- The Guardian: British researchers get green light to genetically modify human embryos

‘Britain’s first genetically modified human embryos could be created within months, after scientists were granted permission to carry out the controversial procedure in a landmark decision by the fertility regulator.

The Human Fertilisation and Embryology Authority (HFEA) regulator approved a licence application by Kathy Niakan, a stem cell scientist at the Francis Crick Institute in London, to perform so-called genome editing on human embryos.

The decision permits Niakan to study the embryos for 14 days for research purposes only. It does not permit them to be implanted into women. Niakan’s research is aimed at finding the genes at play in the early days of human fertilisation.

The decision was hailed by the Francis Crick Institute and British scientists but will be met with disquiet by those concerned that rapid advances in the field of genome editing is precluding proper consideration of the ethical implications.’

‘The work, using embryos donated by couples with a surplus after IVF treatment, will look at the fertilised egg’s development from a single cell to around 250 cells. The basic research could help scientists understand why some women lose their babies before term and provide better clinical treatments for infertility, using conventional medical methods.

Niakan will use a powerful genome editing procedure called Crispr-Cas9 to switch genes on and off in early stage human embryos. She will then look for the effects the modifications have on the development of the cells that go on to form the placenta.

Crispr-Cas9 has revolutionised biomedical research since its invention three years ago. It allows scientists to make precise changes to DNA, and has the potential to transform the treatment of genetic disorders by correcting faulty genes.’

Related Articles:

British researchers get green light to genetically modify human embryos

Scientists get ‘gene editing’ go-ahead- BBC News

Scientists in UK get approval for ‘gene editing’- BBC News (video)

British scientists granted permission to genetically modify human embryos- The Telegraph

 

Monday 1st February 2016- The World Health Organisation: Films showing smoking scenes should be rated to protect children from tobacco addiction

‘WHO is calling on governments to rate movies that portray tobacco use in a bid to prevent children and adolescents from starting to smoke cigarettes and use other forms of tobacco.

Movies showing use of tobacco products have enticed millions of young people worldwide to start smoking, according to the new WHO “Smoke-free movies: from evidence to action”, the third edition since its launch in 2009.’

‘“With ever tighter restrictions on tobacco advertising, film remains one of the last channels exposing millions of adolescents to smoking imagery without restrictions,” says Dr Douglas Bettcher, WHO’s Director for the Department of Prevention of Noncommunicable Diseases.

Taking concrete steps, including rating films with tobacco scenes and displaying tobacco warnings before films with tobacco, can stop children around the world from being introduced to tobacco products and subsequent tobacco-related addiction, disability and death.

“Smoking in films can be a strong form of promotion for tobacco products,” adds Dr Bettcher. “The 180 Parties to the WHO Framework Convention on Tobacco Control (WHO FCTC) are obliged by international law to ban tobacco advertising, promotion and sponsorship.”’

‘Studies in the United States of America have shown that on-screen smoking accounts for 37% of all new adolescent smokers. In 2014, the US Centers for Disease Control and Prevention estimated that in the United States alone, exposure to on-screen smoking would recruit more than 6 million new, young smokers from among American children in 2014, of which 2 million would ultimately die from tobacco-induced diseases.

In 2014, smoking was found in 44% of all Hollywood films, and 36% of films rated for young people. Almost two thirds (59%) of top-grossing films featured tobacco imagery between 2002 and 2014. That same year, the US Surgeon General reported that adult ratings of future films with smoking would reduce smoking rates among young people in the USA by nearly one-fifth and avert 1 million tobacco-related deaths among today’s children and adolescents.’

Related Articles:

Films showing smoking scenes should be rated to protect children from tobacco addiction

Smoking in the Movies- The Centers for Disease Control and Prevention

WHO calls for adult ratings on films that feature smoking- The Telegraph

Films portraying smoking should get adult rating, says WHO- The Guardian

Friday 15th January 2016- BBC News: Plan to reduce organ donation vetoes by families

‘Bereaved families have blocked the donation of organs from 547 UK registered donors since 2010 – about one in seven cases, figures show.

NHS Blood and Transplant (NHSBT) says it will no longer seek the consent of families formally, to make such “overrides” more exceptional.’

Related Articles:

Plan to reduce organ donation vetoes by families

Organ donations vetoed by hundreds of bereaved families- BBC News

Hundreds of bereaved families blocking organ donation, according to NHS- The Independent

Letting families veto organ donations is an outrage- The Telegraph

NHS to prevent bereaved families blocking donation of relatives’ organs- The Telegraph

Wednesday 13th January 2016- BBC News: Should scientists be allowed to modify human embryos?

‘The body which regulates fertility research is to consider the first application in the UK to genetically modify human embryos.

The Human Fertilisation and Embryology Authority (HFEA) will consider an application from Dr Kathy Niakan to edit human genes for research into miscarriages.

Dr Niakan said the experiments would provide a deeper understanding of the earliest moments of human life and could reduce miscarriages.’

Related Articles:

Should scientists be allowed to modify human embryos?

Kathy Niakan: Scientist makes case to edit embryos- BBC News

Monday 4th January 2016- The British Medical Journal: Junior doctors are set to take industrial action, says BMA

‘Junior doctors are set to take three days of industrial action, after negotiations between the association and the government over the terms of the junior doctor contract broke down on Monday 4 January, the BMA has said.

As The BMJ went to press the association announced that the action would take place in January and February, after the government failed to meet junior doctors’ concerns over changes to the contract.’

BBC News (Junior doctor strikes back on as talks fail); Jeremy Hunt’s response:

Related Articles:

Junior doctors are set to take industrial action, says BMA

Junior doctor strikes back on as talks fail- BBC News

Junior doctors announce they will strike next week- The Independent

Junior doctors in England to strike next week after talks break down- The Guardian

Sunday 3rd January 2016- The Independent: Charity launches website to give people ‘greater control over their death’

‘A website will be launched this week that will allow people to complete an online declaration of how they wish to be treated in the final weeks of their life.

The charity behind the site said anyone who completes the document, known as an “advance decision” – detailing how someone can refuse a specific type of medical treatment or drug at some time in the future – will have greater control over their death.

Compassion in Dying said it created MyDecisions.org.uk  in response to growing concerns about how few people were planning ahead for end-of-life  treatment should they lose the ability to make their own decisions.

The website will take people through different scenarios that they may encounter if their health fails. From Thursday, users can receive a copy of their advance decision, otherwise known as a living will, or a copy of an “advance statement”.

An advance decision is legally binding, so if a healthcare professional ignores it they can be taken to court.

An advance statement differs from an advance decision in that it sets down a person’s preferences, wishes, beliefs as a guide for anyone who might have to make choices if they have lost the capacity to make decisions.’

‘Research commissioned by Compassion in Dying revealed last year that only 4 per cent of Britons have made a record of their preferences or appointed a lasting power of attorney. ‘

See:

Charity launches website to give people ‘greater control over their death’

Wednesday 30th December 2015- The British Medical Journal: Voluntary euthanasia is now legal in Quebec, says appeal court

‘Quebec’s law permitting assisted dying and voluntary euthanasia is now in force, even though the federal government in Ottawa is still drawing up national legislation on the right to die. Quebec has been allowed to go ahead with its own law after the province’s highest court rejected a challenge led by a physicians’ group and a disabled patient.’

See:

Voluntary euthanasia is now legal in Quebec, says appeal court

Sunday 6th December 2015- The Independent: Jeremy Hunt says non-EU foreign patients to be charged for using NHS services including GP and A&E care

‘Non-EU visitors and migrants to the UK will have to start paying for NHS services, including A&E care and ambulances, the Government has announced.

The changes would see patients from outside the European Economic Area (EEA) charged for urgent and non-urgent care, including rides in ambulances, X-rays, setting broken bones, blood tests, draining fluids and care received from paramedics.’

‘Health secretary Jeremy Hunt said the proposed move would save taxpayers £500m a year by 2018.

Mr Hunt said: “We want to make sure that everyone makes a fair contribution to services, by extending charges to make sure visitors pay for the care they receive.

“This government was the first to introduce tough measures to clamp down on migrants accessing the NHS and these changes will recover up to £500m per year to put back into frontline patient care.”’

Related Articles:

Jeremy Hunt says non-EU foreign patients to be charged for using NHS services including GP and A&E care

Government plans to extend NHS charges for non-EU patients- The Guardian

Non-EU patients ‘should be charged for GP services’- BBC News