Hollywood celebrity Angelina Jolie was hailed this week for her bravery in revealing that she has had a preventative double mastectomy. The New York Times published her explanation as a scoop on its op-ed page:
“For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.”
Susceptibility to breast and ovarian cancer runs in Jolie’s family. Her mother died at 56 of breast cancer and she carries the BRCA1 gene. Doctors told her that she had an 87% chance of contracting breast cancer. After the operation, she said, the risk is now only 5%.
The news was reported widely, so widely and extensively that columnist Brendan O’Neill, of Spiked, complained that it had overshadowed “everything from the savagery in Syria to the tussle over the future of the EU”.
Will the publicity help breast cancer sufferers? Daily Mail columnist Amanda Platell criticised Jolie for making the difficult and exhausting surgery seem too easy. Her doctor at the Pink Lotus Breast Center in Beverly Hills posted the whole procedure on her blog. It was staged over three months and it takes many weeks to recover. However, the doctor said that Jolie was filled with “bountiful energy”, worked hard on directing another film and took time out to visit the Congo to highlight violence against women.
“To imply, as she has done, that it is possible to bounce back in a few days places an unfair burden on those women who struggle physically and mentally in the aftermath of such major and life-changing surgery.”
There was a political edge to her essay as well. It appeared to be an attempt to influence the US Supreme Court to rule against Myriad Genetics's patents on the BRCA 1 and 2 genes.
“It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.”
Media coverage, though, hardly scratched the surface of the complex ethical issues involved in Jolie’s decision to remove both breasts even though were no signs of cancer. According to the US government’s National Cancer Institute, “preventive mastectomy should be considered in the context of each woman’s unique risk factors and her level of concern.” In other words, worry itself is a factor. Many women with the BRCA gene fret so much about their future that they come to think that a mastectomy is the only solution. But there are other options, like frequent surveillance from an early age.
In fact, one study from the University of Michigan has shown that nearly three-quarters of women who decided to have one breast removed were actually at very little risk of developing cancer in the healthy breast. They were driven more by fear than by good medical reasons.
Jolie has had a very difficult personal history with a number of partners, including a lesbian relationship, estrangement from her father, adopting as a single parent, global fame as the world’s most beautiful woman, and intense scrutiny of her personal life by the media. Her case is obviously unique. While it is clear that she is brave and determined, it is far from clear that other women should take her as a role model.
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) goes on sale on May 22 after more than a decade of revision by 1,500 experts. As the bible of psychiatry, it is enormously influential. Based on its diagnoses, patients will be able to claim sickness benefits, insurance and compensation. Drug companies can market new products. Odd behaviour will become a medical problem.
The purpose of DSM-5 is to enable doctors to make more reliable diagnoses of mental disorders by setting strict criteria. But most of the commentary that has accompanied its launch has been negative. As The Economist notes, “In the eyes of many critics it is a vehicle for misdiagnosis, overdiagnosis, the medicalisation of normal behaviour and the prescription of a large number of unnecessary drugs.”
The new edition adds to the ever-expanding number of diagnosable conditions: disruptive mood dysregulation disorder (children’s tamtrums), excoriation (skin-picking) disorder, hoarding disorder, binge eating disorder and grief at the death of a loved one. By one calculation, half of Americans will experience a diagnosable mental illness in their lifetime.
The critics of the new edition include the chairman of the last edition, Allen Frances. He claims that DSM-5 "includes new diagnoses and reductions in thresholds for old ones that expand the already stretched boundaries of psychiatry and threaten to turn diagnostic inflation into hyperinflation".
Thomas R Insel, director of the National Institute of Mental Health, the leading US government's agency for mental illness has attacked the manual's "validity". “Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure.”
And the Division of Clinical Psychology, an eminent UK body, wants doctors to abandon psychiatric diagnoses and to develop alternatives which do not use the language of "illness" or "disorder". It says: "Psychiatric diagnosis is often presented as an objective statement of fact, but is, in essence, a clinical judgment based on observation and interpretation of behaviour and self-report, and thus subject to variation and bias."
Every edition of the DSM has attracted strong criticism. Perhaps the ultimate reason is that the mind is a still a mystery. Psychiatrists have fundamental differences over how to explain mental illness: is it purely biological? Is it due to social stresses? Does it exist at all? No doubt they will be arguing just as heatedly over DSM-6.
The research, conducted by Oregon Health and Science University and published in Cell, involved the replacement of the nucleus of a normal egg cell with that of a skin cell. This procedure is known as somatic cell nuclear transfer. A few days after this, stem cells were extracted from the embryo.
The stems cells from cloned embryos are used to create tissue genetically identical to the DNA of the patient. This means that procedures like organ transplants could be performed without a risk of rejection.
The researchers are sceptical that the embryos could be developed into viable babies. They did not implant the embryos and said they had no intention of doing so. They said that this technique had been tried on monkeys for years, and never resulted in the birth of a cloned monkey.
Professor of Stem Cell Sciences at the University of Melbourne, Martin Pera, believes the breakthrough will lessen opposition to therapeutic cloning. "I think in general, where we look at the potential for alleviating disease, and when that potential becomes real, then some of the objections I think tend to diminish."
Is bioethics compatible with democracy? This is not a question that surfaces very often in policy debates featuring prestigious bioethicists. However, in a provocative column in The Guardian, Nathan Emmerich, a young bioethicist, asks whether bioethicists are turning into a priestly caste:
“In a secular age it might seem that the time for moral authorities has passed. However, research in the life sciences and biomedicine has produced a range of moral concerns and prompted the emergence of bioethics; an area of study that specialises in the ethical analysis of these issues. The result has been the emergence of what we might call expert bioethicists, a cadre of professionals who, while logical and friendly, have, nevertheless, been ordained as secularpriests.
“This suggestion – that there are expert bioethicists – might appear to have profoundly anti-democratic implications. Indeed handling expertise, including scientific expertise, is a central difficulty for democratic societies and its extension into the realm of moral values seems, on the face of it, to compound the problem. Nevertheless the Human Fertilisation and Embryology Authority (HFEA) has constantly made use of expert bioethicists and two members of the recently convened Emerging Science and Bioethics Advisory Committee (ESBAC) are listed as "bioethics specialists"…
“Expert bioethicists cannot allow themselves to become a priestly caste. They must engage with the public and, in doing so, become more fully engaged by and with their concerns. Bioethics must become part of the drive to make science public and part of the politics of scientific expertise.”
The German and Czech governments allow sex offenders to be surgically castrated – provided that they give informed consent to the procedure. This has put them at loggerheads with the European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment (CPT). It has denounced the practice as degrading treatment which should be ended immediately.
Writing in the Journal of Medical Ethics, John McMillan, of the University of Otago, in New Zealand, argues that the CPT is mistaken. All the evidence shows that prisoners are not coerced and that they choose this option freely in an effort to pull their damaged lives together.
There are various options open to sex offenders who want physiological assistance in controlling their sex drive. Chemical castration is reversible – but more expensive. The Czech government says that it cannot afford it. An orchidectomy is the surgical removal of the testes. This is uncommon nowadays.
Instead, offenders are offered testicular pulpectomy, a procedure in which the core of the testes is removed. This technique has been refined by surgeons as it is often done in treating prostate cancer. It is less disfiguring than an orchidectomy but nearly as effective in removing the production of testosterone.
Dr McMillan concludes that surgical castration is an ethical option so long as there is informed consent:
“in cases where psychiatrists have good reasons for thinking that castration will lead to a transformation of self that is integrated and will enable sex offenders then castration might be the kindest cut. Leading a life in which the actions you perform are consistent with the considerations that you think you should act upon is one important aspect of agency. Despite the undeniable fact that chemical and physical castration are capable of changing people in ways that make most of us uneasy, when there are good reasons for predicting that it will result in a person being able to reconstruct their agency, then we should not view castration as cruel or inhumane treatment.”
The bill, proposed by minister for social inclusion Bill Hunter, is intended to overcome "discrimination" in current IVF regulations. Current law permits access to IVF services only for women deemed "medically infertile".
Mr Hunter said that the bill discriminated against women who were healthy but whose "social circumstances prevent them from conceiving without some sort of assisted reproductive treatment".
Both major parties have allowed a conscience vote on the bill. It has already passed in the upper house and is expected to pass in the lower house by a two vote majority.
Current restrictions mean that women have to travel interstate for IVF treatment.
State premier Jay Weatherill last week publicly supported the lifting of restrictions. However, Attorney-General John Rau and former health minister John Hill have said they would not support reproductive treatment for same-sex couples.
A Californian women has been sentenced to 5 years imprisonment after she misappropriated US$2.5 million from a surrogacy company. Tonya Ann Collins, 37, set up the company Surrogenesis in 2005, along with the escrow company Michael Charles Independent Financial Holding Group.
From then until 2010, Collins used money from the companies for various unauthorized expenses - automobiles, homes, jewellery, clothing, and vacations for herself and others. Over 50 surrogate mothers were defrauded of their payments, in addition to countless clients who lost tens of thousands of dollars. On top of her jail sentence Collins has been ordered to pay restitution to the victims.
Collins was able to avoid detection by pretending Michael Charles was an independent, impartial party in the financial transactions to pay for surrogacy procedures. Eventually, Surrogenesis and Michael Charles suffered substantial cash flow problems, and various surrogate mother fees and related surrogacy expenses were not paid by the companies as required.
"Tonya Collins orchestrated a cruel fraud, the effects of which are still being felt by the victims," US Attorney Benjamin B. Wagner said in a statement. "She not only stole victims' funds from their escrow accounts, but in many cases caused other injuries to victims, permanently foreclosing certain victims' ability to proceed with a surrogate pregnancy for which they had planned for many years."
"[I'm] devastated", said Beth Mardones of Chicago, one of the victims of the scam. "I thought this just couldn't be right because we had signed a contract. We did everything the right way," she said. "I just felt that all of our hopes of having our own biological child were shattered."
A complex custody dispute has come before an Israeli court, raising questions about the limits of legal parenthood as well as the rights of parents with disabilities. A disabled woman is taking state social services to court after being denied custody of a child she had conceived by surrogacy.
In 2009 wheelchair-bound Ora Mor Yosef organised the insemination of a volunteer surrogate mother with sperm from an Israeli father. Mor Yosef's intention was to take custody of the child once born. However, when the surrogate gave birth to healthy girl, Jewish social security services immediately took custody of the child on the grounds that Mor Yosef was not a legal parent. The child was handed over to adoption services.
Mor Yosef appealed to the Israeli High Court of Justice, which has halted the adoption procedures until the end of a court case assessing the woman's rights to raise the child.
According to the woman's attorneys, the seizing of the child from the surrogate mother is due, in large part, to Mor Yosef’s perceived inability to care for a child due to her disability. Mor Yosef has muscular dystrophy.
However, she insists that her disability does not prevent her from leading a full life. If granted custody, Mor Yosef will seek out the adaptive tools and assistance she needs to help make certain the healthy little girl would enjoy “the best possible upbringing.”
Of the 166 detainees at Guantanamo Bay, about 100 are on a hunger strike. About 20 are being force-fed, according to the New York Times. About 40 medical staff have arrived to ensure that the detainees are fed.
The men want their cases heard before a court. Many of them have been at Guantanamo for 12 years without being charged.
What are the medical ethics of force-feeding? It seems to violate the norms of informed consent and refusing burdensome treatment. The American Medical Association sent a letter to Secretary of Defense Chuck Hagel on April 25. It quoted the 1975 Tokyo Declaration of the World Medical Association which takes an unambiguous stand on the issue: “Where a prisoner refuses nourishment and is considered by the physician as capable of forming an unimpaired and rational judgment concerning the consequences of such a voluntary refusal of nourishment, he or she shall not be fed artificially”.
It is not clear how many doctors, if any, are involved in the force-feeding.
However, President Obama has ignored the niceties of medical ethics for the hunger strikers. He simply told the media, “I don’t want these individuals to die.” Politically it is impossible to release the detainees; legally it is hard to try them. So they remain in limbo, frustrated and angry.
The military has not released much information about the force-feeding regimen. But in The Daily Beast, infectious diseases expert Kent Sepkowitz, of Memorial Sloan-Kettering Cancer Center, makes it sound excruciating:
“Without question, it is the most painful procedure doctors routinely inflict on conscious patients. The nose—as anyone knows who ever has received a stinger from an errant baseball—has countless pain fibers. Some patients may scream and gasp as the tube is introduced; the tear ducts well up and overflow; the urge to sneeze or cough or vomit is often uncontrollable… The procedure is, in a word, barbaric. And that’s when we are trying to be nice.”
However, he also is unsure what is to be done.
“In this debate individual doctors are stuck at a crossroads of unusual complexity. Sworn to alleviate pain and prevent death where possible, we also are sworn to respect the wishes of the individual. For us, there is no simple way out. Though sharing some similarities, the situation is distinct from respecting the wishes of a patient dying from an untreatable illness—starvation has a remedy.”
India and China are not the only countries with lop-sided sex ratios due to sex-selective abortions. Georgia, a former member of the USSR in the Caucasus with a population of about 4.5 million, has a distorted sex ratio at birth of 114 boys to 100 girls. One-third of the 36,000 abortion performed last year in Georgia were for sex selection. The natural ratio is about 105 to 100.
"Those figures really took demographers by surprise. No one had expected sex selection to spread to that area, but as in much of East Asia, the abortion rate is quite high," Mara Hvistendahl, author of Unnatural Selection: Choosing Boys over Girls, and the Consequences of a World Full of Men, told Radio Free Europe.
"The new prenatal diagnostic technologies have come in as these countries develop. And the birth rates have also fallen very rapidly in these areas. These are the same trends that we saw decades earlier in East Asia and now they are hitting the Caucasus region."
Most Georgians are nominally Christian. The head of the Orthodox Church, Patriarch Ilia II, put the topic of gendercide on the national agenda by proposing a ban on most abortions in his Easter homily. “When the country is in such a difficult demographic situation, I think that the government must pass a law banning abortions, with just a small number of exceptions, of course."
While everyone seems to agree that sex selection is undesirable, solutions get bogged in the abortion debate. None of the officials interviewed by RFE would support a ban on abortion. Prime Minister Bidzina Ivanishvili opposes it, saying that greater prosperity is the best way to reduce sex selective abortion.
However, Mara Hvistendahl is sceptical. "What is actually happening is that sex selection is something that hits first in urban areas, in rapidly developing countries, not in the poorest places in the world. That is why it hit China, that's why it hit India. And that is why it is now hitting parts of Eastern Europe. And when it hits those countries, it is the elite that takes up the practice first."
The Caucasus is one of the world’s most volatile regions and demography is a weighty geopolitical issue, especially since Georgia and neighbouring Armenia, whose cultural backgrounds are Christian Orthodox, border on Muslim states. As the English-language Georgia Times points out, “if the trend continues, by 2050 the population of Georgia and Armenia will be approximately equal (and this despite the fact that the demographics in Armenia also leave much to be desired), and the population of Azerbaijan will be 3 times larger than Georgia's population.”
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| michael@bioedge.org
11:53:58 PM
A Californian women has been sentenced to 5 years imprisonment after she 
