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  11:34:00 AM

Privacy 1: security flaws

US healthcare provider Anthem Inc. has come under fire for failing to protect confidential health data, following the hacking and theft of information from a database with confidential information about 80 million patients.

On Wednesday, the company admitted that hackers had gained access to “personal information relating to consumers and Anthem Blue Cross employees who are currently covered, or who have received coverage in the past.” This included names, dates of birth, social security numbers, member ID numbers, addresses, phone numbers, email addresses and employment information, but not, apparently, medical information or credit card numbers.

“Cyber attackers executed a very sophisticated attack to gain unauthorized access”, the statement read.

The company has been heavily criticised for failing to encrypt patient data – a precaution that may have stifled the hacking operation.

“It is irresponsible for businesses not to encrypt the data,” said Trent Telford, chief executive of Covata, a large data security firm in Virginia. “We have to assume the thieves are either in the house or are going to break in. They will always build a taller ladder to climb over your perimeter security.”

Kevin Epstein, vice president of advanced security and governance at email security vendor Proofpoint, believes that in the main healthcare companies do not have the same concern for security of data as retailers or financial services companies. Breaches like the one at Anthem are, he said, “a scathing indictment of how at a board level, security has not been a crucial issue to date.”

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  11:28:00 AM

Privacy 2: big data and privacy rights

A Nuffield Council review of the British Government’s ‘’ scheme has found that the existing privacy framework needs major revision. 

According to the review -- the findings of which were released earlier this week -- public participation should be at the heart of big data projects in health care and biomedical research.

The report considers issues of privacy and public interest and how developments in data science have put considerable pressure on conventional means of protecting privacy (including privacy rights, data protection and duties of confidence). It concludes that good governance that involves public participation and accountability is essential to maintain public trust.

Some of the more striking recommendations include:

  • The UK Government should introduce robust penalties, including imprisonment, for the deliberate misuse of data, whether or not it results in demonstrable harm to individuals.
  • There should be complete audit trails of everyone who has been given access to NHS data, and the purposes to which they have been put.
  • An independent, broadly representative group of participants should be convened to develop a public statement about how data held by the Health and Social Care Information Centre (the entity that controls the use and availability of big health data from the NHS) 

Cambridge University professor Martin Richards – the chair of the working party that produced the report – stressed the importance of improving the existing framework:

If we don’t get this right, we risk losing public trust in research, and ultimately missing out on the benefits this type of research can bring.”

Professor Mike Parker of the University of Oxford, another member of the committee, said: “Consent is very important. It is clearly very important that people know what their data is going to be used for.”

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  4:31:00 AM

3-parent IVF approved by British Parliament

After years of debate, the British House of Commons approved the creation of embryos with genetic material from two women and one man by a vote of 382 to 128. The House of Lords will probably pass the bill, which amends the 2008 Human Fertilisation and Embryology Act, later this year.

The technique is so controversial that even its name is a matter of dispute. Supporters describe it as “mitochondrial transfer”; opponents and the media call it “three-parent embyros”. There are two approaches, one beginning with a woman’s eggs and the other with an embryo. But both transfer the nucleus of a cell with faulty mitochondria floating in its cytoplasm into a cell with healthy mitochondria from a second woman.

The headline in Nature News summed up the significance of the vote: “Scientists cheer vote to allow three-person embryos: British decision could be a watershed to approving mitochondrial replacement technique in other countries”. Britain is the first country in the world to allow mitochondrial transfer, which has been banned elsewhere because it alters the human germline and could be described as “genetic engineering”. The Food and Drug Administration in the US is currently studying the issue. If it were to green-light the technique, it could rapidly spread elsewhere.

"It's great news for the patients with mitochondrial disease. It gives them real hopes and that's just fantastic,” commented Doug Turnbull, a neurologist at Newcastle University, who has been prominent in lobbying for a change in the legislation.

The technique is meant to help families whose children would otherwise live with a mitochondrial disease. These vary greatly in severity, but at their worst the children suffer from diseased organs, gastrointestinal disorders, respiratory disorders, neurological problems, autonomic dysfunction and dementia. There are various estimates of how many families would be helped by the IVF technique. Nature News said that 2,000 women would benefit, based on a recent letter in the New England Journal of Medicine. However, the letter said that there would only be 152 women affected each year. Of these, perhaps 10 or 20 might take advantage of it.

Prof Alison Murdoch, one of the technique’s pioneers, said: “This is good news for progressive medicine. In a challenging moral field, it has taken scientific advances into the clinic to meet a great clinical need and Britain has showed the world how it should be done.”

How was it done? How did British scientists manage to persuade Parliament to overcome the “moral challenges” and to accept “progressive medicine” which its opponents described ominously as genetic engineering, three-parent babies, and eugenics? There appear to be four elements in their lobbying strategy.

Advance planning: a number of scientific, ethical and public consultations have been carried out since 2011, with the enthusiastic backing of scientific and government organisations.

Highlighting the suffering of the children and their parents. Some affected families have had very tragic experiences. One woman, Sharon Bernardi, lost all seven of her children to mitochondrial disease.

Framing the technique as a cure for children. In the media, mitochondrial transfer was consistently described as a cure for dread diseases. In fact, not one child will be cured; instead, healthy IVF children will be created. The editor of the Journal of Medical Ethics, Julian Savulescu, phrased it very carefully in an article for the Guardian: “Importantly, by doing this transplant at the very early stage of embryo development, the disease is cured. The children of the offspring of this procedure will themselves be free of mitochondrial disease. It would be eradicated forever in this family.” But in a video directed at members of Parliament, he said, less cautiously, “every year 150 children are born with this condition and you have the power to cure them.”

Defining the human person as nuclear DNA. Mitochondrial DNA constitutes only 0.054 per cent of the total DNA in a cell, according to Dame Sally Davies, Chief Medical Officer for England, who played an important role in the debate. It is the DNA in the nucleus “which determines our personal characteristics and traits such as personality, hair and eye colour”. This was repeated over and over by supportive scientists: mitochondrial DNA is just a battery pack. No one explained how mitochondrial DNA could be both a negligible part of the human person and could also have devastating effect upon a child’s organs, systems and personality.

Redefining genetic engineering. Instead of defining genetic engineering as modification of the genome, scientists spoke of it as modification only of nuclear DNA. The mitochondrial DNA was simply a replaceable module or an interchangeable spare part. In one of the cleverest redefinitions, Stephen Wilkinson, a bioethicist at Lancaster University, “mitochondrial replacement isn’t genetic modification as such, but rather donation … nothing really new is being added to the human gene pool.” In other words, genetic engineering only happens if an artificial or non-human gene is added to the embryo.

Not all scientists welcomed the decision. Paul Knoepfler, of UC Davis School of Medicine, and a leading American stem cell researcher, thought that legalisation was premature:

“There is no doubt that mitochondrial diseases are truly terrible and need to be addressed, but if the potential outcomes from the technology are still vague, there are safety concerns, and it raises profound ethical issues such as changing the human genome heritably as is the case here, then my view is that a careful approach is both practical and logical. We cannot at this time have a reasonable expectation that this technology would be safe and effective. That may change in coming years with new knowledge. I hope so.
“As strange as it may sound, although mitochondria have been studied for around 150 years, they remain in many ways still a new frontier for science with many mysteries. We are only now, for example, starting to understand how the mitochondrial genome works. There was just recently a very unexpected discovery that the mitochondrial genome produces thousands of potentially powerful non-coding RNAs with largely unknown functions. Nobody has any clue how these RNAs might behave in the context of mitochondrial transfer.”
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  10:51:00 PM

Torture: sometimes a man’s gotta do what a man’s gotta do, say bioethicists

Torture is an issue on which the public might expect bioethicists to be moral absolutists. Never again! Never ever! It was somewhat surprising, then, to read in the New York Times that one of the world’s leading animal rights theorists, Oxford’s Jeff McMahan, support torture.

There are limits, of course. Mafia toe-cutting is out, along with the amusements of serial killers and the waterboarding used by the CIA in the bad old days of the Bush Administration. But there might be cases, McMahan argues, where “Torture can be morally justifiable, and even obligatory, when it is wholly defensive – for example, when torturing a wrongdoer would prevent him from seriously harming innocent people.”

Moral absolutism leads to impossible conundrums, says McMahan.

“It is one of the problems of the absolutist view of torture that it has to identify some threshold on the scale that measures the elements of torture, such as suffering, and then claim that nothing, not even the prevention of a billion murders, can justify the infliction of that degree of harm, even on a wrongdoer. But the view does not absolutely prohibit the infliction of the highest degree of harm below the threshold. It has to concede that the infliction of that degree of harm can be permissible, even to prevent harms far less bad than the murder of a billion people. The idea that there is such a threshold is wholly implausible.”

Another utilitarian who supports the use of torture in rare circumstances is the best-known of animal rights theorists, Peter Singer. In his book The Life You Can Save: How to Do Your Part to End World Poverty, he says, “I would argue, if I find myself in the highly improbable scenario where only torturing a terrorist will enable me to stop a nuclear bomb from going off in the middle of New York, I ought to torture the terrorist.”

Another prominent bioethicist who supports torture is Frances Kamm, who teaches at Harvard University. In her recent book Ethics for Enemies: Terror, Torture, and War , she argues that torture may well be permissible in a variety of cases. She writes, “it is sometimes permissible to torture someone, at least for a short time without permanent damage, if we would otherwise permissibly kill him”.

Ivory tower arguments for torture in philosophy journals have real world consequences. McMahan relates that an American philosopher, Henry Slue, admitted that torture was not absolutely wrong in an influential article in 1978. Two CIA agents later thanked him. They were relieved to find that their day jobs were ethically justifiable. 

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  10:31:00 PM

NY families fight nursing homes for guardianship

Nursing homes in New York State have been accused of using ‘guardianship petitions’ as a means to coerce elderly residents into paying outstanding fees.

A startling expose in the New York Times this week discusses a number of instances where nursing homes have requested courts to transfer guardianship away from the family. Ostensibly these requests are prompted by family feuds, suspected embezzlement or just the absence of relatives to help secure Medicaid coverage. 

However, judges, legal experts, and others well versed in the guardianship process claim that often the petitions are used as a means of duress.

In a guardianship case last year involving a 94-year-old resident in a Jewish aged care facility, New York Supreme Court judge Alexander John Hunter issued a scathing 11-page critique of the motivations behind the petition made by the nursing home’s management.

“It would be an understatement to declare that this court is outraged by the behavior exhibited by the interested parties — parties who were supposed to protect the person, but who have all unabashedly demonstrated through their actions in connection with the person that they are only interested in getting paid,” he wrote.

In a more recent case, this time involving a family who refused to pay exorbitant rates to a Catholic nursing home, a court evaluator threw out the guardianship petition and questioned the motivations of the facility. The family spent US$10,000 in legal fees fighting the case.

Some nursing homes argue that guardianship petitions are the best way to resolve disputes about payment for care. The alternative is to sue an incapacitated resident who cannot respond.

“When you have families that do not cooperate and an incapacitated person, guardianship is a legitimate means to get the nursing home paid”, said Brett D. Nussbaum, a lawyer for the Catholic nursing home Mary Manning Walsh.

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  10:30:00 PM

No longer anonymous in Germany

The days of anonymous sperm donation are over in Germany. The German Supreme Court has settled a patchwork of decisions and ruled that children of any age may request the identity of their biological father. "There is no specific minimum age necessary for the child," the judges said. Parents may make a request on behalf of the child.

The only limitation is that the parents (usually the mother) must be able to prove that the child wants to know and that the effect of disclosure upon the donor must be taken into account. However the decision stated that the right of children to know the identity of their fathers normally outweighs the donors’ right to privacy.

The case was brought by sisters aged 12 and 17 who had been denied access to their sperm donor father’s identity. Their parents had waived a right to access at the time of conception. The status quo of German legislation was that children can only access this information when they are 16. However the Supreme Court said that children begin to ask questions about their origins as early as kindergarten.

Since the 1970s, an estimated 100,000 children have been born from sperm donation in Germany.

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  10:24:00 PM

FGM convictions: Egypt 1, England 0

For the first time ever, an Egyptian doctor has been convicted of performing female genital mutilation. Dr Raslan Fadl was sentenced to two years hard labour for operating on a 13-year-old girl in 2013 who later died of complications. Dr Fadl denied performing FGM, which is illegal in Egypt, and was backed up by the girl’s father. He was acquitted by a lower court but prosecutors appealed and the ruling was overturned.

By contrast, in England, recent statistics show that FGM is performed on at least 15 girls every day and not one single doctor has ever been convicted. In December alone there were 558 newly identified cases of FGM.

John Cameron, of the Health and Social Care Information Centre, said: "These new figures indicate that female genital mutilation is a bigger problem in the UK than we thought and there are obviously children at risk of being subjected to this cruel and unnecessary practice right now.

One case is currently being tried. Dr Dhanuson Dharmasena allegedly performed FGM on a patient at the Whittington hospital in north London. This is the first time a case has made it to the courts, although FGM has been illegal in the UK since 1985.

According to the National Health Service more than  20,000 girls under the age of 15 are at risk of FGM in the UK each year and that 66,000 women are living with the consequences of FGM. The true figures are unknown.  Sometimes girls are taken back to their countries of origin during the summer holidays so that the primitive surgery can heal before they return to school.

Last year, a number of ministers signed a declaration of zero tolerance. “This government is absolutely committed to preventing and ending this extremely harmful form of violence,” they wrote. One year later, the figures seem to be rising. 

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  10:20:00 PM

Sex-selective abortion: I’m OK with that, says UK academic

Sex-selective abortion is almost universally reviled – by opponents of abortion because it kills an unborn child and by feminists because it entrenches discriminatory attitudes towards women. However, it has its defenders, even in the Western world.

Writing in The Conversation, Dr Pam Lowe, a sociologist at Aston University in the UK, argues that “You cannot promote gender equality by enacting laws that place restrictions on women’s bodies. Banning sex-selective abortion opens up a world in which there is such thing as a ‘good’ and ‘bad’ reason for an abortion.” To her mind, a ban is a plot by pro-life politicians to make incremental restrictions on a woman’s right to abortion, both in the UK and in the US.

“Although it may seem counter-intuitive, supporters of women’s rights need to oppose the banning of sex-selective abortion. This campaign has nothing to do with ending gender discrimination. It is a strategy of the pro-life movement to reduce women’s access to abortion more generally. While the continuing discrimination against women which leads to coercive abortion for gender reasons is a serious problem, you cannot end gender oppression by placing new restrictions on women’s lives.”
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  10:09:00 PM

Life sustaining treatment 1: withdrawal

Withdrawal of life-sustaining treatment is a common and more or less accepted procedure in end of life care. There is, however, significant disagreement about the underlying moral framework used to justify it. A recent article in the journal Bioethics attempts to address one key question involved– whether withdrawal of life sustaining treatment is an act of killing.

Andrew McGee, a lecturer in health law from the University of Queensland, argues that withdrawal of care is an act that causes death, but that it should be considered an example of ‘letting die’ rather than ‘killing’.

Whereas many others have argued that withdrawal of care is a mere omission, McGee believes it implausible to characterise discontinuation of treatment as a passive procedure:     

“Allowing a consequence can still be causing that consequence, in the sense that I turned off the heating and allowed the room to cool down by doing so…my turning off the heating is what allows the room to cool down and so causes the room to cool down in that sense.”

“One [cannot] distinguish letting things happen from causing to them to happen for once we concede that letting the room cool down can still be described as causing it to cool down, it would follow that letting someone die could, by parity of reasoning, be described as causing them to die.”

But while discontinuation of treatment is a kind of act, it is nevertheless not the cause of death itself; it is only the cause of the timing of death. McGee argues that withdrawal of treatment is part and parcel of the decision to provide life-sustaining measures in the first place. The end of this whole procedure is to extend life for a certain time; one is not causing the patient’s death when they chose to end the process:

“If we are merely delaying death by providing life-prolonging measures, then, in a sense, we are delaying the point at which we withhold those measures. The withdrawal merely allows a process that was underway, but then halted in its tracks, to resume, which is equivalent to a later decision not to halt the process in its tracks.”

I don't pretend to have provided a comprehensive account of McGee’s thesis, but I do hope to have indicated the direction of his argument. His thesis, when taken as an absolute statement on the matter, conflicts with a position held by two unlikely allies, bioethicist Julian Savulescu and Catholic ethicist Anthony Fisher. They both argue that withdrawal of life sustaining treatment is, at least in some cases, tantamount to killing. McGee in contrast, asserts that withdrawal only affects the time of death; it does not itself cause death.

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  9:52:00 PM

Life sustaining treatment 2: A family perspective

We have examined the underlying philosophy behind withdrawal of care, but some would argue that one misses the existential realities of families grappling with the decision of whether to withdraw care. A new study published in the latest edition of the Journal of Medical Ethics tries to capture just this.

The study, prepared by Celia and Jenny Kitzinger from the UK based Chronic Disorders of Consciousness Research Centre, provides empirical data on the attitudes of families towards withdrawal of end of life care. From the information collected the authors argue that families often desire to terminate the life of their loved one, but nevertheless are repelled by the thought of ‘starving’ him or him.

Kitzinger and Kitzinger interviewed over 51 individuals who had a relative with a severe brain injury that had rendered them unconscious or minimally conscious. Participants were given much time to tell their stories and the interviewers refrained from asking generic questions.

The authors found a number of trends:

1)   Families generally concluded that the individual would rather be dead only after they had exhausted all possibilities of bringing the individual back to a fully conscious state.

2)   Following on from this, it was evident that with time families tended to shift their attitudes over a period of years to the view that the participant would rather be dead.

3)    At this point families put in place ‘ceilings of care’ such as ‘do not attempt cardiopulmonary resuscitation’ (DNACP) and an agreement not to aggressively treat infections (e.g., with intravenous antibiotics).

4)   Despite their desire that their loved one’s life be ended, family members were generally very frightened at the thought of the patient ‘starving to death’.

5)   A number of interviewees, with varying levels of seriousness, had thought of illegally killing their relative in a ‘human way’, so as to avoid the withdrawal of Artificial Nutrition and Hydration.

The authors conclude the article by suggesting that ‘other ways of bringing about death’ such as ‘terminal sedation’ be offered to patients and (as proxy decision makers) their families.

One does wonder, considering the situation that the families find themselves in, whether they have sufficient opportunity and encouragement to attend counseling services. This is the flip side of what the authors recommend, but perhaps of equal or greater importance.  

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