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.