Why the ranks of nurses are rapidly thinning

A combination of image and funding problems is taking its toll on the will of nurses to work on in the profession. Karen Kissane reports.

Han-Wei Lee, 22, is everything the nursing workforce is not: young, male and non-Anglo. An intensive-care nurse at the Royal Melbourne Hospital, he takes pride in his work. But he is a man in a woman’s world, and has grown used to strange looks when he tells people what he does for a living.

More annoying is the way some patients ask, “Is that all you’re going to be, a nurse?”

“Especially where I’m working; if you turn your head away for half an hour, someone dies,” Mr Lee says. “I think people have this perception of nurses as handmaidens, but it’s so much more involved than just making beds.”

For nurses, the image problem is tiresome. But for the rest of the community, the consequences of this and other problems facing the profession could prove disastrous. A Federal Government report released last week warns that Australia faces a shortage of 31,000 nurses by 2006 because 22,000 are expected to leave the workforce in the next five years. Three-quarters will be retiring; many of the rest will leave because they are burnt out and disenchanted.

Jill Illiffe, national secretary of the Australian Nurses Federation, warns that if the shortfall is not averted: “It means you’ll have to close beds, because you won’t have enough people to look after them. The only other option is that we’re going to be like developing countries: people will come in and get critical care, but their families will have to come in, too, to look after them.”

The nursing profession is like a patient with a lingering ailment, constantly prodded by experts trying to work out a cure for its ills. The current report, Our Duty of Care, is the 12th review, inquiry or research project into the profession in the past six years. It follows a Senate inquiry report earlier this year that warned today’s 5000 vacancies already presented a crisis.

Across the Western world, nursing ranks are thinning. Young women have more careers open to them than previous generations of women, nursing leaders say, and the perception of nurses as low-status “handmaidens” rather than professionals does not fit the modern aspirations of either sex. The main problem has not been recruiting nurses, however, but retaining them in a system battered by a decade of budget cuts.

The existing shortage is creating conditions that lead to more nurses walking away. “It’s like a cat chasing its tail,” says Patricia Heath, chairwoman of the panel that produced the report.

She met one group of junior nurses who decided to leave in their first year of work. “They were only out of university for nine weeks and they were put in charge of a high-dependency surgical ward where the patients were very, very sick, and the only support they had was a student nurse. All of those nurses said they would finish off that graduate year and then leave.” Meanwhile, older nurses were often exhausted from working double shifts to cover for lack of staff, Mrs Heath says.

The shortage has been intensified by buckpassing by state and federal governments, which share different areas of responsibility for managing the profession. “I think generally there has been a lack of ownership about who should be doing the planning,” says Ella Lowe, a panel member and head of the school of nursing at La Trobe University. There has also been a lack of political foresight: “In the early ’90s, we were paying nurses to go away, offering them voluntary departure packages.”

In response to the report, the Victorian Government called on the Commonwealth to fund more training places. The Federal Government said no amount of places would be enough if the states did not hold on to nurses by giving them good working conditions.

Australia cannot train all the people who want to be nurses. According to figures from the Australian Vice-Chancellors Committee, this year more than a quarter of eligible applicants to nursing courses did not receive a place (2934 of 11,314). The nursing shortage is a crisis for state governments, which run the public hospital system, but most funding for nurses’ courses comes from the Federal Government, which is responsible for universities.

Victorian Health Minister John Thwaites says the state has fewer nursing undergraduates this year (2040) than it had in 1992 (2925). He sees the shortage as the biggest problem facing health in the next decade: “If you don’t have nurses, you can’t provide care, and the number of patients is increasing every year.”

A spokesman for federal Education Minister Brendan Nelson said the report’s recommendations about nursing education would go to the federal review of higher education, which is due to make recommendations to cabinet by the end of the year.

Victoria has managed to win 3300 nurses back to the system with a mix of incentives including nurse-patient ratios that limit workloads, pay rises, refresher courses and postgraduate scholarships. But Mr Thwaites warns that the supply of recruitable ex-nurses will eventually be exhausted.

It seems that Han-Wei Lee can look forward to a lifetime of job security. He acknowledges the job has its problems: shifts trash his social life, menial tasks detract from patient care, and he works an extra day a fortnight for the money.

But he feels he is in the right place: “One of the nice things has been seeing people come in for cardio-thoracic surgery, knowing they’ve only got months or weeks to live because of blockages in their coronary arteries, and seeing them go home six days later with a new lease of life.”

Our Duty of Care

The recommendations:

· An immediate increase of 400 training places in universities

· Low HECS fees for nursing

· Programs to lure back retired nurses

· Drives to recruit men, Aborigines and people from ethnic backgrounds

· A Nursing Council of Australia
· More funding for the clinical part of nurses’ training

First published in The Age.

Parents, needy hit as fees increase

Parents, needy hit as fees increase BULK-BILLING CRISIS

Catherine Robinson went to a 24-hour clinic with severe pain. She was a student and needed bulk-billing, but it was a Sunday morning and the clinic told her it no longer bulk-billed on Sundays. Unable to pay $32 up-front, she was turned away.

“Even if I’d had the money at home, I didn’t have the strength to go and get it and come back,” she says. “And I was in so much pain that I didn’t care. I just went home to bed.” Later she spoke to her mother, who was so concerned that she paid to have her own GP visit her daughter, then 21, at her home in Caulfield. He admitted Ms Robinson to hospital and she had emergency surgery that afternoon.

The link between money and medical care has strengthened since that incident, 18 months ago. The rate of bulk-billing has been falling since 1997 and is now at a 10-year low of 74.5 per cent of GP consultations. The number of visits to GPs that were bulk-billed fell by 1.6 million in the March quarter.

AMA Victorian president Mukesh Haikerwal predicts the rate of fall will accelerate because of the cost to doctors of the indemnity insurance disaster. “By September, I’d estimate the figures would show another 20 per cent drop,” he says.

Where does that leave patients who cannot easily afford to pay? They can try alternative services, scrabble for the money – or avoid going to the doctor, making a mockery of the idea of a universal health care system.

For city people, there are alternatives. The State Government says the number of patients presenting to hospital emergency departments with GP-style problems has jumped 6.6 per cent in the past 12 months. Dr Chris O’Neill, of the North Yarra Community Health Centre in Hoddle Street, says its custom has risen 10-15 per cent in the past year after two “stalwart” bulk-billing doctors moved out of the area.

But the crisis is most acute in rural and outer metropolitan areas. Program manager for the Eastern Ranges GP Association in Lilydale, Kristin Michaels, says a recent consumer consultation found lack of bulk-billing was the second greatest medical concern of local residents.

Sandra Daly, 56, recently moved to the outer suburb of Cranbourne. She says she has been unable to find a medical practice that will bulk-bill her, even though her only income is a widow’s allowance.

Ms Daly says she could not afford to get her usual flu vaccination this year, and now she cannot afford to see a doctor with the flu she has caught as a result. “I happened to go into a clinic off the street last week, because I was not very well at all, and they refused me,” she says.

For families whose children have special needs, putting off doctors’ visits is not an option. Darrell Harding, from Lara, near Geelong, has a son, Rhys, 10, with an autistic disorder. Mr Harding says: “I work full-time, but on pretty low wages. Our family doctor used to bulk-bill but doesn’t any more. The difference we have to pay is about $12 per visit.

“When it comes to the weekend and you want go for a drive to the beach or into town, that’s about $12 worth of petrol. Some weeks, if Rhys has had a bad run and needed several visits, we’re forced to stay at home.”

Chief executive of the Association for Children with a Disability, Michael Gourlay, says the problem is widespread.

“All the good doctors – the ones who are prepared to take the extra time to understand children’s special needs – are saying they can’t survive on bulk-billing,” he says. “If families look elsewhere, they face an inferior service from the few doctors still prepared to bulk-bill on the basis that their consultations are kept very short.

“Bulk-billing’s demise is hitting hardest among parents who are in the paid workforce but on low wages. They’ll still go to see the GP but it will mean they get behind with their electricity bills, or they’ll have to make a heartbreaking decision not to let their child go on a school camp or excursion.”

City people are only just discovering what country people have long endured. The rate of bulk-billing has always been much lower in regional areas.

A sole parent who lives in Sale, Nadine Hatfield, says she found the lack of bulk-billing humiliating.

“When I wasn’t working, it was either pay up-front or buy food for the week, but you don’t want to have to explain that to a doctors’ receptionist because the waiting room is full of people and it’s a small town, so everyone knows everyone,” she says.

Kaylene Lay, who lives in Stratford, about 12 kilometres from Sale, says there is no medical practice near her that bulk-bills all patients.

“If I or my husband or my children visit the doctor, it costs $45 up-front, so we’re $21 out of pocket for every visit,” she says. She says this means “you watch their temperature and hope they’ll get better. You try and barter with your doctor to get prescriptions you may never need to fill. A couple of times I’ve been to the doctor with my son, who gets tonsillitis, and if he hasn’t needed penicillin that day I’ve said, `Can you give me a script and if his tonsils get worse I’ll fill it?’ rather than having to pay another $45 the next day.”

For Christina Jones, of Benalla, the issue is the way in which cancer tests and treatments are not bulk-billed. Her breast cancer has now spread.

“I just had radiotherapy, and the gap was just on $650 for two weeks,” she says. “Some of the scans – MRIs are up to $700 and you only get something like $400 back . . . I only earn $18,000 a year.”

She says she would rather pay an extra 3 per cent Medicare levy and just “walk in and have everything for nothing and know I’d be all right”.

First published in The Age.

Pay IVF donors $10,000: expert

Infertile couples should be allowed to pay women up to $10,000 for a donation of eggs, according to leading IVF specialist John McBain.

Dr McBain, chairman of Melbourne IVF, also called for Victoria’s Infertility Treatment Act to be ditched: “It gets in the way of many people having families.”

Dr McBain said the law should be changed to allow payment because lack of donor eggs is the biggest obstacle for women over 40 who are on fertility treatment. “I’d like to be giving treatment to women who don’t have any useful eggs of their own and can’t get any,” he said.

But his proposal has been criticised by the Catholic Church and another senior IVF specialist.

Catholic Church spokesman Father Anthony Fisher said commercial trade in eggs would exploit poor women.

“There’s a frightening trade in human organs in Asia and the Middle East, and in gametes (sperm and eggs) in some parts of the United States,” he said. “Australians don’t want to be part of that.”

He said that in some parts of the United States, poor women who could not afford surgery were offered free operations, or the chance to jump a hospital waiting queue, if they donated their eggs.

Monash IVF medical director Gab Kovacs said he opposed paid egg donors. “I think we’ve got enough good people in the community who will do it altruistically. Once money comes into it, I just feel that people may not be honest enough about their histories.”

Dr McBain said donors should receive $10,000 for a single cycle, which produces between eight and 16 eggs, and up to $30,000 for several cycles. He said at present only two or three women a year volunteered for unpaid anonymous donation to strangers.

“I’m trying to break out of this mindset that it’s not nice to offer someone an incentive to help someone else with the donation of tissue,” said Dr McBain, who recently helped Melbourne woman Leesa Meldrum successfully challenge Victoria’s ban on IVF treatment for single women.

“I think giving eggs for an IVF program is hard work. It involves a lot of . . . attendances at the clinic, anaesthetic, hospital admission, a small surgical procedure.”

Egg donors also risked the rare side-effect of ovarian hyperstimulation, which affects one in 800 women on IVF and requires hospital admission for treatment, he said.

Father Fisher said the health issues should not be minimised. “Those IVF deaths that are reported around the world from haemorrhaging are usually from egg collection.”

The chief executive officer of the Infertility Treatment Authority, Helen Szoke, said egg donation was not just about supplying the needs of infertile women.

Children would be born who would want to know their origins and who would have their own feelings about the fact that their eggs were bought, she said.

Professor Kovacs said the Infertility Treatment Act should not be ditched. “I think the act is terrible; it’s got lots of conflicts in it . . . But, having had one, if we said we wanted to get rid of it, it would seem like (IVF practitioners) didn’t want policing any more. It would seem that we were trying to do something underhand.”

A spokeswoman for the Victorian Government said there were no plans to remove bans on the sale of human tissue, including gametes. But the Law Reform Commission would be asked to examine the issue of eligibility for treatment under the Infertility Treatment Act, she said.

A national patient advocacy group plans to lobby Premier Steve Bracks for several IVF changes. Access Infertility Network executive director Sandra Dill said Victoria’s regulations were the toughest in Australia and were obsolete even before they were implemented.

She said they forbade some people from removing frozen sperm or embryos to states where the service they wanted was legal.

Also see: Unnatural Selection

First published in The Age.

Unnatural selection

A saviour from human ills or the means to a new super-genetic over-class? Karen Kissane reports from the biotech frontline.
The recipe for a longed-for baby used to be a man, a woman and a touch of stardust. But that was before some kinds of baby-making moved into the laboratory; before the warm surrender to fate was chilled by the cool reckoning of science; before new technologies for making humans began to raise fears of a “post-human” world.

It was before the creation of children moved from a private affair between individuals to a public issue debated in committees and classrooms. In this history and philosophy of science tutorial at Melbourne University, there are few stars in the eyes of students talking about reproductive options.

They are told to imagine a child, Sarah, dying of leukaemia. Is it right to clone her so that her life can be saved by cells obtained from the cloned 12-week-old foetus, even if this risks miscarriage of the clone?
Two young women think the cloning is OK but suggest the cloned foetus should be aborted at 12 weeks, after the cells are obtained, because the siblings would face emotional problems growing up as genetic twins who are years apart in age.
But Patrick, another student in the class, is uneasy that this cloning would conceive new life purely to service an existing one. He thinks this principle could justify “a laboratory somewhere where they just make body parts from people and take what they need and they’re not humans any more; they’re just there for our purposes”.

This is the central issue in the growing international debate about reproductive technologies: what is human dignity, and how should it be upheld?

In 1992, the US Supreme Court declared that “at the heart of liberty is the right to define one’s own concept of existence, of meaning, of the universe, and of the mystery of human life”.

Does this mean that respecting human dignity requires allowing people freedom to choose according to their own moral framework, leaving bio-ethics decisions to the parents who must live with their consequences? Or is there something greater that must be protected, and that justifies the community setting legislative boundaries?

Organised religion is languishing, and with it the belief that humans are precious because they are made in the image of God. So what now justifies the erection of a safety fence around “humanness”? And what will happen if we yield to the very human temptation to tinker with it?

The sci-fi scenarios floated after the birth of the first IVF baby, Louise Brown, in 1978 are now on our doorstep. Technology is close to breakthroughs that some would argue are not so much life-enhancing as death-denying. Bio-ethicist Professor Julian Savulescu, who works at the Murdoch Children’s Research Institute, knows of a Melbourne couple who has already asked if their child, who died soon after birth, could be cloned. (The answer, on both technical and ethical grounds, was no.)
At least two Victorian women have medically retrieved sperm from the bodies of their recently dead husbands, hoping to conceive children post-mortem (in Britain, where one woman has conceived two children this way, the tabloids call it the “sperm widow” phenomenon). In the US, grieving parents of an adult daughter who died leaving frozen embryos behind paid a surrogate to bear their grandchild for them.

Medicine has always been about cheating nature, but now it is doing so in ways that challenge our sense of what is “normal”. A 63-year-old in Italy has become a mother; in Melbourne, IVF specialist Professor Carl Wood has helped a post-menopausal woman of 52 conceive a child using a donor egg.

We do not have to wait for cloning to see the way new technology can produce strange kinks in kinship. Some infertile men now ask their fathers, brothers or cousins to donate semen for artificial insemination. Older women in several countries have acted as surrogates for their daughters’ babies, giving birth to their own grandchildren.

For some, the right to choose is now extending to the right to choose what others see as a disability. A Melbourne IVF specialist, Dr John McBain, has reported that a deaf couple applied to use embryo selection to conceive a deaf child.

It is possible to imagine a world in which sex and procreation are separated. In Japan, researchers have gestated goats in an artificial womb, conjuring visions of foetal organ banks, or of human hatcheries like those in the sci-fi movie The Matrix. If that arouses anxieties about women being made redundant, the gender balance is weirdly restored by other researchers who have grown a rat embryo from the fusion of two female eggs, without any sperm.
While the inhuman possibilities are chilling, most current concern swirls around the prospect of superhumans. People might end up being bred like animals, argues social philosopher Francis Fukuyama, professor of international political economy at Johns Hopkins University, in his new book Our Post-human Future: Consequences of the Biotechnology Revolution.

He writes, “Geneticist Lee Silver paints a future scenario in which a woman produces a hundred or so embryos, has them automatically analysed for a ‘genetic profile’, and then with a few clicks of the mouse selects the one that not only lacks ¤ single-gene disorders like cystic fibrosis, but also has enhanced characteristics such as height, hair colour and intelligence.”

A Melbourne couple approached Wood about genetic selection to help them avoid a child with low intelligence (but not retardation), a problem that ran in one side of their family. If Wood had been able to help them, would he have been right to do so?

Silver is also quoted in the new book Redesigning Humans: Choosing Our Children’s Genes, by Gregory Stock, director of the Program on Medicine, Technology and Society at the school of Medicine at UCLA.

He writes, “Silver, a molecular biologist at Princeton University ¤ imagines we may eventually expand our senses by replicating special adaptations found in other animals: ultraviolet and infrared vision (from spiders and snakes); the detection of magnetism (birds); sonar (bats) and acute smell (dogs).” If you find cross-species enhancement repugnant, consider this: what if a monkey gene were found that could, without harm, protect humans against AIDS?

Stock does not think such scenarios are threatening: “Re-making ourselves is the ultimate expression of our humanity.” Fukuyama, on the other hand, believes humanity is in danger of losing itself. He argues for international laws limiting how we use reproductive technologies in order to protect human nature, human dignity and the principle of universal human rights, which he sees as based on the idea of a humanity we all share.
Students in the class at Melbourne University believe it is difficult to deny parents any kind of selection because of principles that are well established with regard to abortion. Discussing the question of whether a deaf couple should be allowed to abort a hearing foetus, Jenny points out, “People can just abort a healthy foetus day-to-day for any other purpose.”

Says Courtney, “If you’re going to give people the right to pick and choose children based on their genetic factors, then I don’t think you can (dictate) what they choose from. If they want to abort a child because it doesn’t have blue eyes, you have to give them that right.” Agrees Thao, “Separate to the issue of whether abortion is right, if you are enabling selection, then you can’t draw lines around how it is used ¤ Someone might want a boy, someone might want someone who’s intelligent.”

Catholics and many other Christians view the creation of life – conception through to birth – as sacred and untouchable because it is “peculiarly under the hand of God”, says Jesuit priest and ethicist Father Bill Uren. But it sounds like God might have to move over.

Parental narcissism has always made sly mockery of another Judeo-Christian idea, the notion of the child as a gift from God, to be treasured in his or her own right. Parents who want children to mirror themselves, or to achieve what they have not, have long shoehorned gentle kids into footy, sporty kids into violin lessons, shy kids into dance class. Is it that much bigger a step to allow parents to choose an embryo that will have a gene for athleticism or musicality – or deafness or dwarfism?

Savulescu believes current selection is too narrowly focused on avoiding problems such as cystic fibrosis. He says future parents should be allowed to choose positive characteristics to maximise their children’s chances in life.

“I believe our essential humanness is our rationality, our ability to reason and make judgments about what’s best for us, and not just be handed whatever fate dishes up to us,” he says. “The story of humanity is one of struggling to change the world for the better and ourselves for the better.”

Parents should be allowed to select a deaf or dwarf embryo, even though it is not what Savulescu would choose. “We do better to allow them to express their humanness to think, to evaluate, to choose and to act.”

But Uren is critical of shopping for a custom fit. He says: “It’s not a contractual relationship we’re entering into when we have a child; it’s not a trade relationship. It’s a gifting, and we don’t put conditions upon this sort of gift.”

As well as being a priest, Uren is an ethicist at Brisbane’s Mater Hospital for Women and Children and a member of the Australian Health Ethics Committee with the National Health and Medical Research council. He says it would be wrong to use genetic selection in ways that subordinate the interests of the prospective child to the desires of the parents.

A philosopher at the Australian Catholic University, Peter Coghlan, fears children would be burdened by unrealistic parental expectations as the notion of unconditional love was undermined.

There are many ways in which new technologies might re-draw the ways relatives are linked to each other. Fukuyama, though, is most concerned about their impact on society.

He argues that the complex, evolved natures of humans should be protected against self-modification. “We do not want to disrupt either the unity or continuity of human nature, and thereby the human rights that are based on it,” he says.

Fukuyama argues that biotechnology “advances” would involve unpalatable trade-offs. A mouse that had its intelligence genetically boosted also seemed to experience greater pain. “We can cure this disease, or make this child more tractable, at the expense of some ineffable human quality like genius, or ambition, or sheer diversity.”

Would mathematician John Nash’s “beautiful mind” have lost its comet-streak of brilliance if he had been modified to avoid schizophrenia?

Fukuyama and Stock concur on one point; as genetic enchancements become available, people will want to use them. Fukuyama believes people want to “medicalise” as much of their behaviour as possible, reducing responsibility for their actions, and that they will be encouraged to do this by powerful economic interests such as biotech companies. He cites the increasing use of drugs such as Ritalin to treat children with attention disorders as evidence.

Stock predicts the motive will be evolutionary competition. “As long as people compete with each other for money, status and mates, as long as they look for ways to display their worth and uniqueness, they will look for an edge for themselves and their children.”

But genetic selection might sneak into the public’s comfort zone because of its health benefits. The Melbourne University lecturer of the ethics class, Rosemary Robins, is also on the federal gene technology ethics committee that regulates modification of plants and animals.

She says: “Health is a very important issue for our society. We value it highly, partly because we’re not too comfortable with death. That then creates the window of acceptability for these new technologies to proceed, and then slowly they become normalised.”

Genetic manipulation to avoid fatal or debilitating disease is already normalised. One opinion poll of eight countries by a Japanese ethics institute found that many people would use safe genetic interventions to enhance the physical or mental attributes of their children. Israelis were the least accepting (22 per cent) and Thais the most attracted (83 per cent). Americans fell in the middle (43 per cent).

Between 62 and 91 per cent of people surveyed would use gene therapy to keep a child of theirs from inheriting a disease like diabetes, and even more (80 to 96 per cent) would use it to prevent fatal diseases.

Compassion softens resistance even to ideas that at first sound macabre. The news of England’s first “sperm widow”, Diane Blood, caused a public outcry until Blood went public. When ordinary Britons saw this pleasant, grieving widow arguing an emotional case in the face of her huge loss, they swung behind her. Opposition to early IVF eased as headlines about “babies in freezers” gave way to newspaper happy-snaps of real babies in arms.

Today, ethicists have raised concerns that new techniques breach the ancient taboo against bestiality. How do you feel about the idea of infertile men’s sperm being “cooked” in rat’s testicles? IVF specialist McBain sees it as a triumph. “We’re trying to cook female eggs in mouse kidneys. I won an international prize for this work. It’s brilliant.”

Ikky? Would you ban it? Then you have just blocked an avenue of hope for young women made infertile by life-saving cancer treatment. McBain is trying to work out how to remove ovarian tissue and grow eggs from it so that such women can still have their own babies.

The final frontier is meant to be reproductive cloning. It has been banned by the Council of Europe, condemned by Unesco and the US president, and is regarded with repugnance by most IVF practitioners.

McBain says “I think that our work is to parallel the normal but failed reproductive process, where a new and unique person can be conceived and given the chance for growth,” he says. “I think cloning, which repeats the DNA of someone who has already lived a life, is wrong for that reason.”

But compassion, in the end, will drive public acceptance even of cloning, Robins predicts. She says students become sympathetic when asked to consider the case of the couple who want to clone their dead or dying only child. “Feeling for the loss of that family is the thing that will allow the decision to go through an ethics committee, say. After all, most of these decisions get made on a case-by-case basis.”

A Melbourne expert in IVF issues, who does not wish to be named, predicts reproductive cloning will largely be driven by infertile men who want offspring who share their genes. “Many men whose partners use donor sperm have (psychological) difficulties with it afterwards. If women use donor eggs, they are still an intimate part of the process, but for men, donor sperm is a very different experience.”

Savulescu says he sees no justification for cloning but he does not think cloning should be banned. “Who is harmed by it? How would it be bad for the child? This blanket revulsion for cloning is based on stereotypes like The Boys from Brazil . . . It might be very valuable to have a parent who has done a trial run of your life, who has some idea of your diseases, your talents and your weaknesses.”

Where, then, will it all end?

God might know but people certainly don’t. In a modern, pluralistic society there is no consensus even on where it should end. Nor is there clarity about what processes society should employ in dealing with these questions – moral education, or legislation? – or which aspects of decision-making should be private and which communal.

Not only are there differences in the views between people, there are contradictions within individuals. Arlette Schweitzer, America’s first grandmother surrogate, is a committed Catholic deeply troubled by commercial surrogacy, which she says is “borrowing the actual makings of a baby from other people”. But, writes Stock, she sees what she did for her daughter as different. “I didn’t even consider myself a surrogate. I was just a mother helping her daughter.”

Then there is the US senator who was a vocal opponent of abortion but an early supporter of embryo research – his daughter had juvenile diabetes. It seems the pop song is right: love changes everything.

But there are problems with leaving decisions in the hands of those who have an emotional investment in the outcome. Sometimes informed choices are made for deformed reasons, and if enough people make them, individual choices grow into a social norm.

In India, where boys are valued over girls, a Bombay survey of pregnancy terminations following ultrasound found 7997 out of 8000 aborted foetuses were female. (Australia has a weaker preference in the other direction; sex selection is permitted in New South Wales and, at Sydney IVF, 63 per cent of couples choose females.)

With “germ cell” genetic enhancement, genetic changes to DNA also affect the ova or sperm of the animal. This means the changes will be passed on to future offspring. Fukuyama warns this could embed the social preferences of one generation in future generations, “like a tattoo that (they) can never subsequently remove”.

Robins believes society is “muddling through” issues raised by biotechnology, and that we need to develop a secular humanist ethic to grapple with them. “People making decisions about their reproductive choices find it very hard to do it on their own. They want some help . . . Even in genetic counselling sessions, where the aim is to be non-directive, people often ask, `But what would you do?’ ”

The law is a clumsy tool for dealing with ethical issues, but is it the only way to slow down the biotech revolution while the rest of the community catches up with its implications?
It has been argued that decisions should not be left in the hands of doctors and scientists because of their vested interests in careers and budgets. And science has always had its boundary riders, so fascinated by possibility that they are oblivious to potential harm.

Fukuyama cites a researcher who said it would be scientifically important to produce an ape-human cross, and others who suggested using women as “hosts” for the embryos of chimpanzees or gorillas. One biotechnology company put human DNA into a cow’s egg and grew it into a blastocyst before destroying it. “Chimera”, the lion-goat-dragon creature of Homer’s imagination, may not stay a byword for a wild, unrealistic fancy.

If we fail to set limits on the biotech revolution, Fukuyama envisages two ugly political scenarios.

One is war on the streets as a genetic underclass resists the embedded advantage of genetic aristocrats who could afford to pay for enhancement. The other is state-sponsored eugenics programs to improve the intelligence of strugglers.

Christopher Newell, an ethicist and member of the National Caucus of Disability Consumer Organisations, envisages a third possibility: a world in which imperfection is not tolerated. While biotechnology offers great hope of genetic cures, at present it is mostly used to screen out embryos or foetuses with disabilities, he says.

“The implications are to be found in legal decisions around the world which are starting to talk about notions of `wrongful birth’,” he says.

People are saying, ‘How did you slip through the net and not get aborted?’. . . The notion that certain things are so overwhelming they strip you of inherent worth as a human being is an enormously dangerous, insidious philosophy.”

The one scenario impossible to imagine is that of everyone taking an absolute stand against genetic enhancement. As Stock says: “Most of us would rather be among the first to live an extended lifespan than among the last to live a `natural’ one.”
He believes humanity is looking at the birth of a new age of growth and achievement. “Will we suddenly lose our nerve because of the realisation that life will change forever, and because we can scarcely guess the character of this child of our creation? I hope not.”

He likens human daring with genetic experimentation to Prometheus’ stealing of fire from the gods, an act he calls “characteristically human”. But he fails to mention that Prometheus’ theft was punished by Zeus, who unleashed Pandora’s box of evils upon the world.

Should we brace ourselves?

First published in The Age.

The age-old quandary

You are 75. You break a hip in a fall and need surgery. While in hospital, you pick up a post-operative wound infection and develop pneumonia. Your forgetfulness intensifies into more serious dementia symptoms as you struggle to cope with the twin assaults of illness and a strange environment. You are now frail and will need weeks or months of care and rehabilitation; perhaps you will never go home again.

The hospital is not set up for convalescents and wants your bed for more urgent patients. Who will look after you, and how will it be paid for?

It is the kind of question that is central not just to your future but to Australia’s, according to Treasurer Peter Costello. This week he warned cabinet of a $50 billion-a-year budget blow-out in health, aged care and income-support programs within a generation unless the sharply rising costs of a greying population are curbed. A visionary attempt to grapple with the future – or an attempt to soften up the public for cuts to Medicare and social welfare?

“This analysis is scaremongering designed to frighten people into accepting public sector budget cuts when, in reality, they are probably not going to be required,” says Stephen Duckett, professor of health policy at La Trobe University.

But an administrator in a private hospital disagrees about the need for concern about the community’s ability to pay for the needs of older people. “Future horror scenario?” she says. “The system has trouble coping with the elderly now.”

In the next 40 years, the number of Australians aged over 65 will rise from 2.4 million to 6.2 million, with the proportion of older people doubling from 12 to 25 per cent. Towards the middle of next century, after the baby boomers have retired, there might be only 2.5 people of working age for every person over 65, compared to more than five people currently.

According to a report by Access Economics to the Federal Government, the number of workers and the level of income tax revenue is predicted to slow down from now; pension outlays will increase from 2010; health spending will rise from 2020; and aged-care demands will increase from 2030.

The figures sound daunting, and some researchers are warning about the necessity to budget for the needs of the elderly. Other analysts, however, say the outcome is unlikely to be dire, with many comparable countries already coping well with higher levels of older people. “Australia in 20 or 30 years’ time is going to be like France is now,” Duckett says. “We will be older, but we will be roughly the same as several European countries are now. These European countries aren’t bankrupt, so what makes us think that we’re going to be bankrupt?”

The current banner of the doom-and-gloom brigade is a landmark report due to be released by the government with next month’s federal budget. The Inter-generational Report by Treasury’s Retirement Incomes Modelling Unit is the first official government study of the future cost of current policies, and it predicts that advances in medical science that allow people to live longer will place a massive burden on taxpayers, mostly due to expensive new drugs and medical technology. The report is designed to trigger a public debate on the sustainability of existing health and aged-care programs.

News of the report came as the Myer Foundation announced a million-dollar project to develop a vision for aged care in Australia, and as the United Nations ended its world assembly on ageing in Madrid.

Greying is a global issue, says Professor Gary Andrews, of Adelaide’s Centre for Ageing Studies, who attended the assembly. He says developed nations face a significant increase in the very old (those aged 80-90), but ageing is also relevant to the developing world. “Already in a country like China you have more than 100 million people aged 60 and over,” he says.

While the details of the Treasury report are still under wraps, others have previously tried to estimate what ageing will cost Australia. Aged-care spending will more than double in real terms from 1997 to 2031, from $5.8 billion to $14.3 billion, warned a staff research paper by the Productivity Commission in October, 2000. But Australia will probably be richer and more able to afford it; even with relatively conservative estimates of gross domestic product, the report said, “spending grows by only about 25 per cent when expressed as a share of GDP”.

The report, Long-Term Aged Care: Expenditure Trends and Projections, predicted that nursing home beds would need to increase from 78,600 to 158,500 in 2031. But, while the aged’s health costs would rise in real terms each year to 2031, they would fall, relative to GDP, until 2021; by 2031, they will be 2.9 per cent of GDP.

Several health economists claim that the view of the elderly as a drain on health resources is wrong. Duckett has researched whether age is a factor in the cost of hospital stays, examining whether 70-year-olds cost more than 55-year-olds with the same condition. He found no systematic variation. “People think they should worry because older people stay longer, but in reality they often have substantially less investigation and interventions than younger people,” he says.

Andrews agrees: “The fact that more people are in their 70s and 80s and 90s has a relatively small impact on total health costs. A lot of research in the past decade (confirms) less than 5 per cent of the increase in health care costs is accounted for by the population ageing.”
Professor Jeff Richardson, of the Centre for Health Program Evaluation at Monash University, says it is not ageing itself that is the problem: “It’s ageing plus new technology.”

But another question raised by the Treasury report is acknowledged by many analysts as a problem: the ever-rising cost of drugs. John Goss, principal economist with the Australian Institute of Health and Welfare in Sydney, says: “The growth for the Pharmaceutical Benefits Scheme has been 9 per cent per year in real terms. If you have growth of 9 per cent, the doubling period is about eight years. It quadruples in 16 years, and it’s eight times (higher) in 24 years. It has huge momentum.”

An unknown factor in the future equation is the health status of the next generation of oldies. Does living longer just mean more years of disability and degeneration, or will increased life expectancy also mean more years of good health?
Duckett believes the latter. “The reason people are living longer is that they are healthier in old age. An 80-year-old in 20 years’ time will be healthier than an 80-year-old today.”

And it has always been the case that people usually chew up the largest amount of health care in the two years before they die, whether this is at 65 or 85, because that is when their health breaks down. “The general view across demographers and health planners is that the need for health care is not based on years from birth but rather is based on years to death,” Duckett says.

There is another, gloomier possibility. People who live longer because of a reduction in one disease might contract another that disables them; if you avoid the coronary at 70, will you face dementia at 72? The Productivity Commission report says advances such as artificial joint replacements and improved treatments for osteoporosis, arthritis and dementia might lessen disability among the aged. But technology might also increase the survival time of people with disabilities, the report says. “Dialysis for renal failure increases survival time, but the aged person receiving such treatment will still typically be unable to perform many tasks

Then again, disability does not necessarily mean institutionalisation. The Productivity Commission estimates that, while about 18 per cent of those over 65 have a profound or severe disability, only 3 per cent of old people are in residential care.

For some people trying to care for the aged now, the question of whether the future poses problems is nonsensical. There is already a national shortage of nursing home and hostel beds, long delays for elective surgery and cancer treatments, and problems with elderly patients acting as “bedblockers” in acute hospitals (too sick to go home, but with nowhere else to go).

“An acute hospital is not a convalescent home for looking after elderly people when they are not acutely ill,” says Denis Hogg, chief executive of Epworth Hospital. “But where do you refer them to for their on-going care?”

He denies that private hospitals cherry-pick to avoid bedblocking – “In our emergency department, 75 per cent of people admitted are over 75” – and he says Epworth has had to set up its own self-funded aged-care coordination team to try to find places for older people who need care following discharge.

“Step-down” care, between a hospital visit and home, is unfunded by private insurance and often unavailable, says Angela Magarry, director of policy for Catholic Health Australia. Like many other organisations, CHA wants aged care and health to be run by one level of government to prevent buckpassing of responsibilities and gaps in the system. CHA has also called for a Medicare “grey card” to be established to protect older people’s right to care.

Denys Correll, national executive director of the Council on the Ageing, agrees that Medicare should be strengthened and says problems such as the blowout in pharmaceutical costs can be managed by price volume agreements between the government and manufacturers.

Goss points out that anxiety over costs tends to ignore benefits: “There’s no need for doom and gloom if any increase in expenditure produces more benefits than costs in terms of older people being healthier, suffering less pain and having a lower chance of dying.”
An extraordinary number of older people are involved in the informal economy through their care of grandchildren, he points out.

“There’s often strong interests behind the position saying that `the world is falling apart’,” says John McCallum, professor of public health at the University of Western Sydney. He is concerned that an atmosphere of pessimism might encourage the belief that more health and aged-care services must be privatised if the government is not to go bust. In his view, “there are serious issues and they do have to be dealt with, but they’re not necessarily going to break the bank or destroy the Australian way of life”.

First published in The Age.

A lot of noise over silence

Sharon Duchesneau was deeply hurt when her father told her that, if she ever had children, she should check with a geneticist to assess the risk that the baby would be deaf, like her. “I felt put down, like it would be bad if my child was deaf, or it was a negative thing to bring a deaf child into the world,” she says. “I took it personally.”

The personal has now become political. Duchesneau and her female partner, Candy McCullough, who is also deaf, are at the centre of an ethical storm over their decision to conceive children using a deaf sperm donor to increase the chance of the children being deaf. To many hearing people, it sounds like one of those stories that could only come from America, that land of the free and home of the bizarre.

But the chairman of Melbourne IVF, John McBain, says a Victorian deaf couple approached his service three years ago wanting help to conceive a deaf baby. “They didn’t have a fertility problem, they just wanted to maximise the possibility of having a deaf child,” he says. “We couldn’t help them . . . We didn’t know how to increase their chances of that. We were able to take the coward’s approach and say there was nothing we could do.”

To many deaf people, the media debate about Duch-esnau’s choice is offensive because it implies that deaf people are defective. The issue for them is not designer-disability but designer-difference. They do not see themselves as people with a disability but as members of a minority cultural group with its own language (auslan), values and community.

Simon Andersson, a deaf man who is an actuary and secretary of the Victorian Council of Deaf People, says: “I get the feeling that people who object to a deaf couple having a deaf baby are objecting to deaf culture. There’s nothing wrong with being deaf. Deaf is fine. Deaf is OK.”

That is not a new concept to ethicists, who have been debating for some years cases like Duchesneau’s. Several examples of deaf children deliberately conceived through embryo selection have been reported overseas, says bio-ethicist Nicholas Tonti-Filippini. But for the wider hearing community, Duchesneau’s stand is confronting. Is it arrogant for “normal” people to assume their lives must be better than the lives of people who lack hearing or sight or mobility? Or has the rebadging of “disability” as “difference” turned into denial, making Duchesneau’s children victims of what one British columnist called “parental psychosis” and “genetic imperialism”?

The case also throws up new questions about reproductive autonomy in an era where lovemaking can be separated from babymaking. Until now, the fear has been that pre-natal selection would be used to try to create high-achieving, near-perfect children. Now we must ask, does the right to choose include the right to choose disability/difference? Do parents have a responsibility to maximise their child’s potential?
Duchesneau had a 25 per cent chance of bearing a deaf child if she conceived with a hearing donor but a 50 per cent chance if she used a deaf donor. When American sperm banks refused her request, she turned to a deaf friend who had several generations of deafness in his family. Five years ago she gave birth to a deaf daughter, Jehanne, and last November she had a son, Gauvin, who is profoundly deaf in one ear but has some hearing in the other. The two women have decided he will not be fitted with a hearing aid unless he wants it himself when he is older. Their story caused an uproar when published in an American newspaper last week.

Andersson’s wife, Karli, who is also deaf, trained as a counsellor with McCullough at an American university for the deaf. Karli says Duchesneau “seemed a very warm, responsible and caring mother”.

Karli is surprised by the media response. Like Andersson, she believes the problem for deaf people is not lack of hearing but the way it is treated by the mainstream community. “I understand (Duchesneau and McCullough’s) decision, and I think they were discriminated against when they went to sperm banks to ask for a deaf donor,” she says. “What’s the difference between that and a black person asking for a sperm donor that was also black?”

Andersson uses a similar analogy when asked about deafness as disability. He returns to his insistence that deafness is not an innate problem and only becomes difficult because of discrimination, just as “women are discriminated against, but being a woman is fine”.

Tonti-Filippini says Duchesneau’s choice is a logical consequence of allowing prenatal selection. “If an IVF team is prepared to do selection in order to eliminate a child who has some kind of difference like dwarfism, on what principled basis could they reject a parent who wanted to use IVF to have a child who was deaf? Either they say they are governed by choice, or they must admit that the only ethical principle should be a eugenic one, to eliminate genetic abnormalities and difference.”

He says he finds Duches-neau’s decision horrific, but not because it was used by deaf people. “I condemn out of hand the fact that selection is allowed for anybody,” he says.

Julian Savulescu, an ethicist with the Murdoch Children’s Research Institute and professor of ethics at Melbourne University, disagrees with the women’s choice to have a deaf child but supports their right to do so.

“There are two principles that you need to apply here,” he says. “Has the child itself been harmed by what they did? No. If they had had a hearing sperm donor, then some other child would have been born. This child can’t complain that he wished they’d used a hearing donor because then he wouldn’t have been born . . .

“The second principle relates to how we should control or regulate reproduction. I personally believe that it’s better to be hearing than deaf . . . so I think what this couple has done is the wrong thing. I personally think you should try to have a child that’s going to have the best opportunities in life. But the fundamental principle that I think should operate here is one of respect for procreative autonomy, respect for people’s own decision about the kind of children they want to have.”

He says he used to believe deaf couples should not use IVF to make a deaf baby but has now changed his mind. He also thinks that, ultimately, parents should be permitted to choose traits such as intelligence or sex, and he agrees with some disability groups that selection only to eliminate abnormality is discriminatory. “You either allow genetic testing for whatever couples think is a relevant characteristic or you don’t allow anything . . . The downside is that sometimes people will choose in ways that you disagree with. That’s the price you have to pay for freedom.”

Savulescu says ethicist Peter Singer, currently in America, disagrees with him. “I asked him about this. He thinks couples should be prevented from using IVF to do this because he thinks it reduces the amount of wellbeing in the world; the world is better off if the child is better off . . . I think that’s based on an arrogance about knowing what’s best for people.”

Rosemary Robins has taken that principle and extended it to a more extreme scenario for her students in history and philosophy of science at Melbourne University. She asks them to debate the question: “Should a deaf couple be permitted to terminate a hearing child?”

“It’s fascinating what the students make of it,” she says. “Mostly they start out saying, ‘Absolutely no way; you shouldn’t terminate the child, there’s nothing wrong with it’. But then they start to think about why we privilege our (hearing) culture over another culture. We allow abortion for social reasons all the time. I can go and have an abortion just because it’s inconvenient for me now because I don’t have a partner; there I am, terminating a healthy foetus. How is it different?”
Since the 1980s, many members of the deaf community in America and Australia have been galvanised by the idea of deafness as a cultural identity involving pride and self-acceptance rather than a medical disability. They call themselves Deaf, with a capital D, and often reject attempts to turn them into “broken hearing people” with the use of hearing aids or cochlear implants.

Lynn Gillam, a lecturer in health ethics at Melbourne University, has been researching the attitudes of deaf people to the termination of deaf foetuses. They do not condemn it, but are puzzled by it because they feel their lives are happy and fulfilled. She says only a minority of deaf people, usually those born deaf, believe deafness is a valuable part of their identity in the capital-D way. Such attitudes are not restricted to deaf people – she knows a wheelchair-bound person and a blind person who both say they would not want to be cured – but she says that deaf people’s separate language has made the phenomenon stronger in their community.

She is not surprised that Duchesneau and McCullough decided against a hearing aid for Gauvin. “If you have chosen to have a deaf child, you are clearly not going to augment what hearing is there because then you are going back on the decision you have made.”
Savulescu says society tends to overestimate how badly disability affects a person’s life, but that some disability groups try to underestimate its impact. He believes Gauvin should get his hearing aid because he should be given every chance to interact with the hearing world. “I don’t accept this view that you’re either in the deaf culture or the hearing culture. I don’t think you have to exclude other cultural influences to maintain your own culture,” he says.

It is something that Karli and Simon Andersson, who grew up as deaf children with several deaf relatives, are starting to come to grips with. Their 10-month-old baby, Bernhard, can hear.

“Having a hearing baby was a little bit of an issue for me, as we have to work hard to ensure that his hearing culture needs are met,” Karli says. “My husband jokes that he is a special-needs child as he requires things that deaf children don’t, like, for example, music; we bought a Mozart CD for him.

“Still, I love him, and I can’t imagine loving him any differently than a deaf baby. Every child is special in their own way.”

First published in The Age.

This is your life: privacy and health

THE girl was rushed to hospital with complications following an abortion. She begged staff to shield her from a relative working in the hospital who might tell her conservative Indian family.

Staff put the girl in a different ward to where the relative, a nurse, was stationed, but failed to tell the girl she had the right to a “manual” admission, with her details kept in an old-fashioned paper file. Instead, her case was recorded on the hospital’s computer database. Here it was found by her relative, who was allegedly in the habit of trawling the system for familiar names.

The result, says New Zealand Privacy Commissioner Bruce Slane, was “a complete breakdown in family relations”. He tells the story to illustrate the sensitivity of health information and the sometimes devastating consequences of its improper release – as well as the ease with which health databases can be violated.

It is a New Zealand story, but it has implications for Australia. The computer revolution is about to hit your doctor’s surgery – and link it with your pathologist’s lab, your local hospital’s emergency room and even those discreet clinics where you might seek treatment following a less-than-discreet sexual encounter.

A Federal Government taskforce is investigating what form this country’s national “E-health” records system should take, and the Victorian and NSW governments have already launched pilot programs for cyberspace sharing of information between doctors and hospitals at a state level.

The information age has opened up Orwellian possibilities for the detailed tracking of individuals’ use of health-care services and the linking of all their medical encounters on one electronic health record (EHR). It could contain all the clinical information now recorded on paper: the symptoms that led you to seek a consultation, the doctor’s diagnosis and the treatment offered.

There are potentially great benefits. Patients should face fewer unnecessary repeat tests or medical accidents. Doctors would be able to get a complete patient history at the press of a button. Researchers could scan the experiences of millions of people to identify nationwide trends in illness and the effectiveness and safety of treatments. And governments hope to cut costs and better assess the performance of doctors and hospitals.

But computerisation raises big questions about how to mediate the sometimes competing goals of all these “stakeholders” in the health system.

Who decides what should and shouldn’t go on to an electronic record? How should privacy be protected, and to what degree must patients relinquish it to satisfy goals identified as being “the common good”? Should organisations collecting information patients reveal as part of their confidential health care encounters be able to use or sell it for profit?

Bureaucrats keen to contain costs and researchers hungry for mass data are among those who have pushed for a centralised database to which every Australian would be connected lifelong. Such a database would be overseen by the Health Insurance Commission, which administers Medicare and the Pharmaceutical Benefits Scheme.

The centralised model was supported by a 1998 report of the House of Representatives Standing Committee on Family and Community Affairs inquiry into health information management. It recommended that individuals carry health “smart cards” and that the medical details on the cards be backed up in a national data warehouse.

“Centralised” has since become the “C-word” of the debate because of concerns that it might arouse public alarm. Parties privy to discussions on the issue privately say there are still some in Canberra who want the centralised model. Publicly, however, stage proponents are talking now only of a system for linking multiple databases.

This means that your separate carers – GP, specialist, chemist, hospital – would each keep their own computerised file on you, but it would be possible for each to access material from the others electronically.

If you arrived in casualty unconscious, hospital staff could call up your GP’s notes to check on your history of blood-clotting problems or allergies to medication; if you needed a new prescription from your GP, he could call up your hospital records
to confirm that today’s prescription would not react adversely with medicine you were given last time you were admitted.

Theoretically, doctors would need your authorisation, and perhaps your smartcard, to do so, although they would probably have the right to override lack of permission in an emergency. And more sensitive information might be “masked” so that a higher level of access was required to read it. “There’s no need for the GP at the 24-hour clinic to know about the three abortions you had when you were 15,” says Dr Sandra Hacker.

Hacker is the AMA representative on the National Health Information Management Advisory Council, the organisation charged with assessing the options. Its Electronic Health Records Taskforce is due to report to health ministers on the issue in July.

Hacker says the AMA is opposed to a central warehouse because of privacy concerns, and she believes the public would be outraged by it. But while she thinks it an unlikely option, she cannot rule it out. “If that’s what the Government legislates, that’s what will happen.”

Patient advocates are not even reassured by the more moderate alternative of links between databases. “The effect (on privacy) may be much the same either way,” warns Meredith Carter, executive director of the Health Issues Centre.

Supporters of a comprehensive system, such as Dr Chris Kelman, a researcher with the National Centre for Epidemiology and Population Research, point out that computer systems containing sensitive information are already in use in banking and the military.

In an article he co-authored in the Medical Journal of Australia , it was suggested that an EHR could even be stored as a secure web page. He says, “The technology is capable of maintaining privacy. Look what’s happening with encryption.”

But if computer hackers can turn a NASA satellite in space, how safe is even the most highly encrypted health records system?

“Scary, isn’t it?” says Dr Sam Heard. Dr Heard, director of the general practice education and research unit at the Northern Territory clinical school of medicine, Flinders University, is not opposed to e-health. He has been working for 13 years on a project called the Good Electronic Health Record. He favors what he calls the “radical” model, where patients themselves would carry their record or choose a trusted third party to store it for them.

Databases worry him. “The more people have access (to a system) and the larger the database, the more valuable it is and the more at risk it is,” he says. “How many people would be using it at any one time? Imagine the security nightmare.”

Dr Heard warns that hackers can download from the Internet “Trojan horse” software that allows them to infiltrate a system and force it to spit out information. It is possible to make a system completely secure, he says, but that would also make it close to unusable.

A less sinister but equally worrying problem is internal computer glitches. Last year, several thousand Americans’ patient records were accidentally displayed on the Internet for two months. A gremlin in the database of the University of Michigan Medical Centre left records detailing treatments for specific medical conditions, employment status and social security numbers available to anyone tapping into the centre’s website.

While the debate about the security of the technology is important, patient-advocate Carter sees it as a secondary one. The real point is that “any system you build is going to rely on human beings to operate it, so you will always get human corruption and human error”.

Carter says the NSW Independent Commission against Corruption reported in 1992 that it had found “a widespread commercial trade in personal information, including Medicare data, between officers of government agencies and other institutions which should know better such as banks, insurance companies and debt collectors”.

Dr Heard worries about the potential for celebrities or even ordinary individuals who have aroused animosity to be targeted and blackmailed or humiliated by the exposure of their health history. “How much would knowledge that (a former prime minister) had cirrhosis of the liver due to alcohol be worth?” he says.

Violation of computer systems by government employees is still being reported. In February, a Queensland inquiry into the misuse of that state’s police database was told that more than 30 officers at one station had given individuals’ details to the station’s cleaner, who moonlighted as a debt collector.

In January, the Melbourne Magistrates Court was told that a customer service officer for the Health Insurance Commission, Mieng Tang, had used his position to access the Medicare histories and personal details of up to 90 people a day. Most were Asian women and women who had been on IVF treatment. His defence was that he had been “bored”.

Here was illustrated both the blessing and the curse of computerisation: Tang was able to flick through many more files than would have been possible if he was handling more cumbersome paper folders, but it was the audit trail of the computer system that detected his illicit access.

Carter points out that these audit trail safeguards were set up because the law requires it of databases held in the public system. But she says the private health sector, which will self-regulate privacy matters under legislation currently before Parliament, will not face the same stringency.

Lastly, there is the potential for deliberate privacy “breaches” for reasons that those controlling the data think justifiable. There was an outcry in 1987 when teenage girls were listed to testify about their under-age abortions in a court case against a disreputable Melbourne gynaecologist. “People said, `Forget the charges; what are you doing to these girls?”‘ Carter says.

In America, pharmaceutical companies have bought health insurance companies so that they can access patient records and direct market to both patients and doctors. Hacker says Australian doctors are now being approached by companies looking to buy their practices.

In Canada, the Privacy Commissioner, Bruce Phillips, reported that information technology also puts a great deal of power into the hands of public servants. He told of an Ontario woman who, supported by her doctor, sought breast reduction surgery to alleviate chronic pain in her back and shoulders. “The health bureaucrats responded by demanding photographs before agreeing to foot the bill,” Mr Phillips said.

On a bigger scale, the greater political acceptance of the role of market forces has led to widespread “data mining”, the sale of mass health information for commercial use. In Iceland, every citizen was tested so that their genetic makeup could be recorded on a DNA databank now managed by a commercial biotechnology company.

Medical data originally given by patients to Britain’s National Health Service in good faith is now under the control of organisations free to sell it to the highest bidder, according to Professor Stuart Horner, the 1998 chairman of the British Medical Association ethics committee.

And Australia’s Health Insurance Commission is already examining how best to sell “de-identified” material from the Medicare and PBS databases. “They are going to do whatever they can within the bounds of their political ability to exploit and mine that resource to get revenue,” says Stephen Millgate, executive director of the Australian Doctors’ Fund.

He says the HIC’s sales aims, expressed in its 1998-99 annual report, “are written in hard-core commercial language; it’s aggressive, it’s about customers and marketing and being competitive”.

Millgate is the greatest doomsayer in Australia’s EHR debate. He is convinced any model adopted by government will be a disaster because its goals will be administrative and budgetary rather than patient-focused. “And there will be no savings; the cost of putting up a system which is accurate is enormous. It will chew its own head off in costs in the first two or three years.

“There are some moral issues here too. Half the world doesn’t have basic health care, while we’re going to spend millions in Western democracies to know everything about everybody’s health. What groups will be unfunded so you and I can have a continuous record of every ache and pain?”

Millgate doubts promises that patients will remain free to choose whether to “opt in” to the system. “What you will find happening is that if you don’t `opt in’, you won’t get certain rebates. It’s quite easy for governments to say something’s not compulsory and then change the financial incentives to make it crazy for someone to resist it.”
A spokeswoman for the federal Health Minister, Dr Michael Wooldridge, says the Government knows that Australians are very protective of their health privacy and that any system would have to be voluntary, with information kept only in summary and patients having the right to edit their records. “If they didn’t want to admit that they were on a psychiatric drug, for instance, they could just take that off.”
While protecting privacy, this raises its own problems. A patient might suffer an adverse event because doctors acted on the assumption that the EHR was complete when, in fact, essential information had been left off it. Who is then legally responsible: the patient who requested the information withheld from the record, the doctor who agreed to withhold it, or the doctor who made a mistake because he was uninformed?
But accurate, accessible records could be invaluable for the chronically ill. Dr Wooldridge’s spokeswoman points out that almost a third of hospital admissions are of elderly people, and most of them have been made seriously ill by interactions between their many medicines.

It is these people that Hacker predicts will use and benefit from linked EHRs. But groups such as her own customers, psychiatric patients, are likely to avoid them, she says. Electronic records of therapy consultations accessible to anyone other than the treating doctor “could make psychiatry almost unworkable. I see politicians, judges, other doctors: they’re not going to want to reveal things to me if they think others will see it”.

Slane, New Zealand’s privacy advocate, is concerned that systems in that country have too often been set up to spread an unjustifiably wide net over patients whose views have not been taken on board. “It seems to be assumed that having people’s health information is a jolly good thing and a use will be found for it sometime in the future … with public opinion a risk to be managed later,” he says.

This ignores the central issue. “The essence of privacy is respecting what other people think is important to them as private, rather than us saying what the values are and that they should apply to everyone always.”

Health Records: The upside

While away on work, Mr Smith, a truck driver, sees a GP. He complains of severe headaches and asks for strong pain relief. What the doctor sees is an unkempt man from out of town requesting a drug of addiction. With Mr Smith’s permission, the GP calls up his medications history to check that Mr Smith has not been misusing prescribed painkillers. He hasn’t.

But a prompt pops up on the screen telling the doctor that the national adverse events register has recently detected an interaction between two drugs Mr Smith is taking for other conditions. Surveillance of the national health records system had found that people taking both often suffered hypertension and severe headaches. The GP prescribes alternative medication for Mr Smith.

– An imaginary scenario from “An integrated electronic health record and information system for Australia?” Medical Journal of Australia.

Health Records: The downside

At the height of Western Australia’s abortion law row in 1997, a woman who had suffered several traumatic childbirths and miscarriages, followed by a severe stroke, found herself pregnant again. Her husband’s vasectomy had failed. She feared another difficult pregnancy might kill her and booked a termination.

The following day, an elderly man phoned and asked for her by her full title, including her middle name. He told her he knew she was due for a termination and sterilisation at the hospital concerned, and that she would rot in hell. More abusive calls followed and a poem “written” by an aborted child to its mother was hand-delivered to her home. An investigation failed to discover how her details were accessed and leaked, although it noted that a staff member had phoned an anti-abortion group from the hospital during the relevant time-frame.

First published in The Age.

Gay women call for IVF law reform

Haley Atkinson hadn’t planned on becoming a figurehead for gay rights. All she wanted was a baby. When she and a gay friend failed to conceive conventionally, they turned to IVF, which in Victoria is forbidden to gays.

They achieved the baby, notoriety and a court hearing. Ms Atkinson and Haydn’s father, Sergeant Mark Keen, then both police officers, were charged with having provided false information or failing to provide relevant information when applying for IVF treatment.

On Tuesday, they sat holding hands as the charges were dismissed by Mr John Hardy in the Melbourne Magistrates Court. He found there was no evidence against Ms Atkinson and insufficient evidence against Mr Keen. He awarded costs in their favor.

The media could not report the case until a suppression order on the proceedings was lifted yesterday.

Ms Atkinson, who has since resigned from the force, said she was relieved to have the ordeal over: “I have no regrets that I have a beautiful baby, but I wish it hadn’t had to have been such a big event.”
She said it was time the law was changed. “Every single person I have come across in shops or whatever has said (the charges) were a load of nonsense. People who know us say, `You’re good people; you deserve to bring up a child because you have a lot of love to give’.”

Ms Atkinson lives with her partner, Ms Joy Murphy, but Mr Keen is also involved in raising six-month-old Haydn. Both women regret that Ms Murphy has no legal rights over the child. She cannot adopt him without Ms Atkinson giving up her rights as a mother.

Ms Murphy said, “Legally, I don’t exist. But I see the look in Haydn’s eyes when I walk in the room. He loves me, and Haley knows it and Mark knows it.

“I may have no legal rights but Mark is the most decent man I have ever met. He wanted to buy a high chair when Haydn was born and he checked with Haley first about whether it would offend me. We are all good friends.”

Both women said that the Infertility Treatment Act contradicted the Equal Opportunity Act, which forbids discrimination in provision of services on the grounds of marital status or sexual orientation.

Dr Ruth McNair, convenor of the Fertility Access Rights Lobby, called on the State Government to make artificial insemination and IVF available to lesbians and single women.

She said New South Wales, Queensland and Tasmania did not confine such treatments to married or de facto heterosexuals. International human rights covenants signed by Australia obliged governments to provide equal access to fertility services.

But the secretary of the Australian Family Association, Mr Bill Muehlenberg, said the rights of the child should also be considered, and the traditional family unit was the best way to raise children.

Mr Muehlenberg said the risk of child sexual abuse doubled in families where the child was not living with its biological father, and that in a homosexual relationship, only one partner could be a biological parent to the child.

The Minister for Health, Mr John Thwaites, was unavailable for comment yesterday.

Ms Atkinson would like more children, but she will probably travel to NSW for treatment.

First published in The Age.

Third World women the next big-tobacco targets

ONCE UPON a time, there was a beautiful woman with long, blonde hair and even longer legs. She was cool and confident and glamorous, in the original sense of the word; “glamor” used to be a spell of illusion cast by a witch.

That was her line of work, too, in a way. This woman was photographed by a cigarette company nonchalantly holding its product, with the caption, “You’ve come a long way, baby.”

And a lot of other women who longed for what she was supposed to symbolise – freedom, autonomy, success – bought the cigarette she was selling. And presumably some of them died for having confused a cancer stick with their dreams.

These days cigarette advertising in Australia is virtually banned, except at the point of sale. But the smoking rates of young women here now outstrip those of young men, and it is feared that worldwide women might eventually overtake men as the chief victims of smoking-related disease.

The tobacco industry has turned its heaviest guns on the young women of the Third World, which is far less regulated than Australia. They are being bombarded with messages linking smoking with Western-style equality, personal freedom and a fashionableness. The World Health Organisation fears the result will be a catastrophic epidemic of tobacco-related illness.

A recent WHO conference on women and smoking in Kobe, Japan, reported that of the world’s 1.1 billion smokers, 200 million are women. That proportion is set to triple in the next 25 years.

In the past decade tobacco companies have managed to double the proportion of smokers among young Japanese women aged 20-29, from 10 per cent in 1986 to 23 per cent this year. In the same period, the overall percentage of Japanese men who smoke fell from 60 per cent to 53 per cent.

WHO reports figures that must have tobacco companies slavering with anticipation: “In China, only 6per cent of women currently smoke, while in Vietnam the figure is just 4per cent. However, if China’s smoking rate for women doubled to near the same rate currently seen in Japan, there would be an additional 40 million smokers in that country alone.”

According to the World Bank, tobacco-induced disease and subsequent health care costs already result in a global net loss of $200billion a year – more than the GNPs of Malaysia and Singapore combined. WHO predicts that by 2025, 10 million people a year will die unnecessarily as a result of smoking, 70 per cent of them in developing countries.

This is a human catastrophe, not just a female one. But there is a growing realisation in international health circles that marketing manipulation of female psychology is a big part of the problem, and that health authorities must tackle the special vulnerabilities of women and girls. The “Kobe Declaration” passed at the conference urged WHO to fully integrate the special needs of women and girls into a proposed international treaty on tobacco control.

The Framework Convention on Tobacco Control will be the first legally binding international treaty aimed at curbing the spread of tobacco products. The aim is to implement it by 2003, and measures being considered include raising tobacco taxes sky-high and banning advertising, promotion and packaging of tobacco products worldwide.

It’s enough to give a cigarette company executive a heart attack. Some might call that karma.

Traditionally Asian women have been protected from the industry’s predations by cultural norms that perceived smoking as unfeminine or a sign of promiscuity. But westernised Asian women with more money for leisure and a belief that smoking is sophisticated and helps with weight control are smoking in increasing numbers.

Even in Australia, research shows significantly more girls than boys aged 14 to 17 are smokers; the you’ve-come-a-long-way-baby syndrome starts young.

It is cruel and paradoxical that women’s healthy goals for themselves – freedom and autonomy – are subverted by marketing into a desire for a product that kills and maims. The supposedly glamorous cigarette damages women in their very femaleness: it causes premature menopause, cancer of the cervix and vulva, infertility, miscarriage and stillbirth, and osteoporosis.

The most fitting archetypal association with it is not advertising’s nubile young woman but the hunched, barren, wrinkled crone.

The Kobe conference concluded that the single most effective way of combating the tobacco industry would be raising taxes on cigarettes.

But it seems important for the sake of women’s health that more is done to break the nexus between smoking and perceived glamor. The Kobe conference suggested that all smokes should be packaged in plain black-and-white wrappers covered in health information.

The Canadian Government might have a better idea. It is currently floating proposals to force cigarette packs to carry large and gruesome photos of cancerous lungs or bloodied brains that suffered terminal strokes.

It would be hard to look glamorous hoisting that out of your handbag.

First published in The Age.

If abortion is a religious issue, why is the state involved?

I ONCE met a woman who taught sex education in a Catholic school. She was warm and enthusiastic and transparently sincere. She told me Catholic schools had changed, and that she was able to teach girls they had choices about their sexuality.

“They can choose to be chaste until marriage, or they can choose to be the town bike,” she said, beaming. “Uh, huh,” was the most neutral response I could muster.

She was as entitled to her belief in the two absolutes – chastity or promiscuity – as I was to my belief that there is a responsible middle course involving neither. And her attitude was no skin off my nose because she was never going to impose it on me or mine; she moulded children whose parents sought out an educational system imbued with those values. Each to their own.

If only there were such a clear division between church and state in the abortion debate. This is an arena where those driven by religious belief often wield power out of all proportion to their support in the community.

Last week a visiting American doctor was detained and told he would be deported or imprisoned if he advocated “activities” in relation to abortion. This followed lobbying of the Immigration Minister, Philip Ruddock, by anti-abortion groups.

In America, President Bill Clinton has agreed to limit aid for international family planning initiatives that support abortion. Republican congressional leaders have for years refused to pass Budget legislation allowing the US to pay its back dues to the United Nations unless Clinton agreed to the restrictions.

Although pro-choice himself – heaven help any man married to Hillary who wasn’t – Clinton capitulated this time because the US faced losing its seat in the UN General Assembly if the debts remained unpaid. Now organisations funded by US money will be forbidden to lobby for liberalised abortion laws.

There will be little joy about that among desperate women in countries such as Nepal, where six women a day die from botched illegal abortions and two-thirds of women in prison are there for abortion or infanticide.

Like the sex ed teacher, these Republicans deal in moral absolutes: abortion is always wrong, never mind poverty or illness, rape or incest or despair. But, unlike the sex ed teacher, they are in a position to impose their views on others who differ.

The power of the American anti-choice movement is understandable. Opposition to abortion is strongly linked to church attendance, and a third of Americans regularly front up in their Sunday best, compared with only one-fifth of Australians.

The US is also a country in which the separation of church and state has favored religion. Its founding fathers, having fled persecution in the old world, focused more on protecting freedom of worship from state intervention than protecting the sovereignty of the state from religion.

But why is it that Australian anti-abortion campaigners – most of whom have strong links to churches – have so much political influence?

It’s certainly not because they speak for the community. Research findings released this week suggest only three in a hundred Australians oppose abortion under all circumstances.

Among the 2151 people surveyed, 97per cent said abortion should be allowed in cases of danger to the mother’s health, 92 per cent after rape, and 88 per cent where there was a strong likelihood of a serious birth defect. Most said abortion should be allowed for reasons such as poverty, unwed motherhood, or couples wanting no more children.

These views do not fit with abortion’s continued position in the Victorian criminal code. They do not fit with restrictions on the morning-after pill RU486, or the inability of many rural women to gain access to abortion services.

The report said the abortion debate remains very much a religious matter, with churchgoing the single most important factor differentiating opponents from supporters.

It concluded that “the separation of church and state” is actually a polite fiction that can be maintained only in the face of consensus about central values. Where the two do separate over values, there is friction, with abortion providing the clearest example.

The results of a previous survey tell us how Australians think such conflicts should be handled: only one-third believes it is appropriate for religious leaders to try to influence government decisions.

There is a case for churches to speak out on social justice issues because they are such big providers of services to those in need. Their dictates on reproductive morality are another matter.

Extremism in relation to abortion has declined in the past decade. Most Australians have come to understand that this painful, tragic, private business is a bad thing in itself, but justifiable if it avoids something even worse. They have abandoned the false certainty of black-and-white positions to grapple with the complexities of greys.

Some will see the shift away from the absolutism of “never” as godlessness. Most of us, though, will recognise it as a moral coming-of-age.

First published in The Age.