Even more ways of making babies

Here's this weekend's column in the Kingston Whig-Standard.

You might have thought that the reproduction revolution had arrived and ended with the birth of Louise Brown, the world’s first known IVF-generated baby.

She was born on July 25,1978. Louise Brown got married in 2008 and has since given birth to two children of her own, not conceived by means of IVF. In those days religious campaigns against IVF were running in overdrive. It was said that IVF babies would be discriminated against, IVF was somehow unnatural, IVF babies would be horrified and suffer dramatic psychological harm once they found out how they came about and the list goes on. None of these predictions turned eventually out to be true. Today opposition to IVF is pretty muted, and often it is predicated on concerns about the cost involving in making such babies.

After that we had a short upheaval caused by our successful attempts at cloning higher mammals. Humans are higher mammals, so if we can produce sheep, and even primates, there is no in-principle reason why we shouldn’t be able to do the same with humans. This would have been a neat tool to weed out all sorts of genetic diseases, but the international outcry was such that human reproductive cloning suffered a stillbirth. The moral panic was pretty much manufactured by religious organizations such as the Vatican. A thoroughly misinformed public feared cloned Hitler-type armies as opposed to a surplus of Claudia Schiffers and Albert Einsteins, stuff like that. These were implausible scenarios anyway.

To be fair, there were also some concerns that could not be brushed aside that easily. It took a lot of miscarriages and seriously disabled sheep to produce Dolly the first cloned sheep at the time. Not unreasonably some opponents of reproductive human cloning wondered aloud whether this would be a price worth paying. Still, one more time religious opponents trotted out the well-worn tropes deployed during the culture wars on IVF. Cloned people would be discriminated against, cloning is unnatural and cloned people would suffer psychological damage on discovering that they’re clones. Critics also showed a remarkable lack of understanding of what gives us moral and legal standing. Some suggested the cloned humans would eventually be abused as involuntary organ sources. That is about as implausible as suggesting that IVF babies could be used for that purpose. For better or worse, birth establishes today a right to life and bodily security in modern democracies.

Fast-forward to 2014. Reproductive health research has thrown up yet more potential means of human reproduction. The news headlines were all over it: We are actually able to produce three-parent babies. Well, kind of. The clinical objective here isn’t to enable three-people relationships to produce a joint child. The objective is to reduce the occurrence of genetic disease. The New Scientist explained a decade ago as good as anyone what’s involved: ‘The procedure would involve fertilising a woman's egg by in-vitro fertilisation outside the body and transplanting the fertilised nucleus to an egg from another woman which has had its nucleus removed. Any child born following implantation of such an embryo would have cells containing a nucleus with genes from both parents, and mitochondria from a woman other than their mother.’ That was then, today this technology is ready to be used.

At this stage, I’m sure, you won’t not be terribly surprised to learn what ‘ethical’ objections have been deployed against this procedure: It goes without saying that it is 'unnatural,’ that it goes ‘against God,’ and, of course that old chestnut about myriad psychological problems the off-spring would suffer from.

My colleague Francoise Baylis at Dalhousie University raises a number of more serious ethical objections. Among other concerns she warns that there are risks to the egg donors. The procedure involves hormone injections. These injections ‘can result in cramping, abdominal pain, nausea, vomiting, bloating, mood changes and irritability. More serious potential physical harms include rapid weight gain and respiratory difficulty, damage to the other organs such as the bladder, bowel and uterus, decreased fertility, infertility and life-threatening haemorrhage, thromboembolism and ovarian, breast or colon cancer.’ Now, it’s one thing if you accept such risks for yourself because you want your own genetically linked child, but it’s quite another if this happens in order to support someone else’s desire to have their own genetically linked child. This argument still begs the question, however, why should we assume that women considering getting involved in such a manner somehow have no, or such seriously impaired, agency preventing them from making their own informed, voluntary choices that we should prohibit such technologies. Baylis also wonders whether this kind of research should be a priority, given competing global health needs. I think she is correct on that count. This kind of work is probably best characterized with the hashtag #richpeopleproblems.

Would future children conceived by such means be harmed or in some other way wronged? The long and short of it is that that isn’t the case, and here is the reason why: The only prospective parents who would avail themselves of such technologies are people who could not conceive their own genetically-linked child otherwise or who would face a high risk that their future child would suffer from a devastating genetic illness. A child born as a result of the described mitochondrial replacement technology would have to ask herself whether her existence is preferable to not existing at all, or existing with an illness that would render her life truly miserable and likely brief. The answer to this question seems like a no-brainer to me. Interestingly, British Columbia’s Family Law Act is ahead of the curve on this. It permits three-parents to be listed on children’s birth certificates already.

The human reproduction revolution continues.

Udo Schuklenk teaches bioethics at Queen’s University, he tweets @schuklenk.

Against taxpayer funded access to IVF services

This weekend's column in the Kingston Whig-Standard, on IVF funding and adoption.

More than a few of my friends, colleagues and even family members think I am wrong on the issue of in vitro fertilization (IVF) funding for infertile couples.

For the life of me I cannot see what interest the state should have in paying significant amounts of money to satisfy some people’s interest in having their own genetically-linked children. I do understand that some people want to have a child that is biologically linked to them. I think the desire is irrational, but evolutionary pressures probably explain this drive to get hold of their ‘own’ child as opposed to opting for an adoptive kid.

My objection to IVF is not religiously motivated. Regular readers of this column will know that I am as secular in approaching ethical issues as they come. So I don’t care strongly about how babies are made, whether it’s by sexual intercourse, IVF, or any number of other means, including reproductive human cloning when that comes eventually about. My argument is not about prohibiting access to IVF. I am concerned about ongoing discussions – even court cases – aimed at getting taxpayers to pay for this sort of thing through our public health care system. In Canada, health care being a provincial matter, we see very different approaches. Wealthier provinces such as Quebec – just kidding – pay for IVF treatment cycles while poorer provinces such as Ontario have chosen not to. Well, who is right?

Given that the question is whether the public health care system ought to provide free-to-user IVF treatment cycles, it’s worth asking: is infertility a disease? I guess it depends on how you define disease. Some infertile people campaigning for taxpayer-funded access to IVF compare their infertility to cancer and other serious illnesses. You might want to ask someone struggling with life-threatening cancer what they make of that kind of comparison. Clearly, infertile people can live perfectly healthy lives very much like other people who choose not to reproduce. The latter choose not to reproduce, the former cannot, but both are able to live healthy lives. If you think that not being able to reproduce biologically is a sign of illness justifiably demanding tax monies to be thrown at it you will obviously disagree. At a minimum though it isn’t self-evident that infertility is an illness. It is also unclear whether we could find a sensible cut-off-point for IVF treatments that ought not to be funded. The oldest woman carrying an IVF caused pregnancy to term was a 74 years old. The sky is the limit and profit maximization is the name of the game for the fertility industry. Unsurprisingly the fertility industry is keen to see IVF treatment cycles paid for by taxpayers as that would increase its income.

Even if infertility was uncontroversially an illness it still wouldn’t follow that tax monies ought to be expended on it. We make resource allocation decisions in health care systems (public and private) all the time. More needs to be said to justify public expense than merely ‘I want my own genetically-linked child, so you pay for my IVF treatment cycles.’ Some cash-strapped parents-to-be argued that it truly is unfair of society to expect of them to pay the $15,000-$20,000 for IVF treatment cycles. I do think to describe this as unfortunate would be correct, that it is unfair is far from self-evident. Indeed, some went so far as to say that they would not have been able to have children if it hadn’t been for someone else paying the bill for the IVF treatment. Here’s my problem with this line of reasoning: The cost of raising a child to the age of 18 currently is in the average about $250,000 in Canada. You can’t tell me that a down payment of $15,000-$20,000 is beyond anyone considering that kind of overall expenditure. If it were, perhaps that would be a good reason to reconsider your spending priorities in life, or better even, your life-plan.

An expert panel working on behalf the last Liberal government in Ontario recommended that IVF treatment cycles be provided free of charge through the public health care system. It noted that some people who rely on their own funds to pay for the treatment, implant too many embryos to ensure a pregnancy. This leads to costly complications in some cases. My response to this argument would be that folks engaging in such risk-taking ought to be required to take out insurance to cover any health care cost their irresponsible behavior requires.

Be that as it may, my broader objection to IVF goes beyond merely bickering about scarce health care resources being wasted on people’s preferences for biologically linked children over – say – adoptive children. I think it’s actually a morally problematic choice to produce more children by costly artificial means while children in need of adoptive parents exist in the country. Yes, I’m not talking Madonna-style purchases of babies in the developing world, but needy children in our own backyard.

At the moment tens of thousands of children in Canada are in need of adoptive parents. They are still looking for a family to call their own. Most of these kids were biologically conceived by people unable to look after them. It remains true that it is for most of us a tad bit easier to make children than to look after them. To my mind it would be decadent of any public health care system to subsidize IVF procedures while in its jurisdiction large numbers of children are in need of permanent homes. It just does not make sense to me. I readily acknowledge that the non-commercial adoption system in this country is far from perfect, but I doubt – given what’s at stake – that there can be a perfect system.

Udo Schuklenk holds the Ontario Research Chair in Bioethics and Public Policy at Queen’s, he tweets @schuklenk

Apologies, I am currently away in beautiful Ilmenau

Folks, I am currently at a conference in picturesque Ilmenau. I'll be back with more frequent entries from May 19 or thereabouts. Apologies for the hiatus.

Meanwhile I reproduce here a piece from the Toronto Star that covers some of my views on IVF and such matters. Following the article is a link to a site where IVF proponents vent their anger and arguments against my views.

The right to bear children

Stuart Laidlaw
FAITH AND ETHICS REPORTER

There are two things in Ashley Bulley-Arbos's house she always wanted, but feared she would never see.

"We had them set up at five months," says Bulley-Arbos, now seven months pregnant with twins thanks to in-vitro fertilization. "It was pretty exciting."

Married to her high school sweetheart, Bulley-Arbos never had any doubt she wanted children. Not many, but she knew she would never feel complete if she didn't have kids with the man she loves, Adrian Arbos.

More than that, she says, it's her right to be a mother – and she wasn't going to let a little thing like infertility get in her way.

"It's not a want, it's a need for me," she says. "If I hadn't ever got pregnant, I could never be happy."

The 25-year-old is now an active member of Conceivable Dreams, a support group for couples needing medical help to get pregnant.

Tomorrow, Mother's Day, the group will lead a march at 10 a.m. from City Hall to Queen's Park with 200 women pushing empty strollers to demand that the province fund in-vitro fertilization. Quebec recently announced that it would soon begin funding up to three IVF cycles per couple.

Bulley-Arbos's friends and neighbours rallied to help her and Arbos raise two-thirds of the $15,000 cost for IVF. She will speak at the rally – dubbed the Pram Push – to tell her story of relying on bake sales, community barbecues and a Bands for Babies charity concert to raise the money.

"It took us a while to get over that we were going to charity," she says.

No one, Bulley-Arbos says, should have to rely on handouts to pay for a medical treatment. "It should be anybody's right to have a baby. This is a medical procedure," she says.

Not everyone agrees.

"It's a perfectly private matter, it's a private interest," says Udo Schuklenk, a medical ethicist at Queen's University.

Being a parent is not a right, he says.

It's a personal choice that the rest of society should not have to pay for through their taxes, he says.

"People die from preventable illnesses because of the way health care resources are allocated."

Schuklenk understands the instinctual desire to produce offspring, but says that does not make it a human right.

"From there it does not follow that there is a moral claim on others to foot the bill," he says. "It's selfish."

Christine Overall, a feminist ethicist at Queen's, warns that if women had a right to be mothers, men would have a corresponding right to be fathers. At that, she says, would allow men to demand that a woman become pregnant, throwing out decades of progress on contraception and abortion rights.

"If someone has a right to be a parent, that implies an obligation on the part of someone else (to also be a parent)," she says. "You don't have the right to the gamies of another."

She does, however, support full funding for IVF, saying it would be unethical to deny some women access to a medical procedure on the basis of ability to pay.

"It should be provided on an as-needed basis," Overall says, adding the question of whether a woman has a right to be a mother needs to be separated from the right to IVF.

"It's not a matter of a right to be a parent. It's a matter of a right to access to a medical procedure."

Overall also worries that if women had a right to be mothers, the medical system would become obligated to do everything possible to fulfill that right, including endless rounds of IVF.

"It's wrong to say you have a right to be a mother, because you can never guarantee a baby," she says.

Having worked in medical clinics in South Africa for five years, Schuklenk says there are children around the world growing up orphaned or in terrible conditions who would have a better life if people in the western world chose adoption over IVF.

But that's not likely to happen, he says, if IVF is easy to get. Besides, he says, those who object to paying for IVF on their own should realize that it costs about as much to raise a child as it does to buy a house.

"And yet, they are not willing to make that initial investment (of paying for IVF)," he says.

Bulley-Arbos, whose twins are due Canada Day, is a firm believer that IVF should be covered under medicare. With a household income of about $60,000, she says, the day-to-day costs of raising a child are affordable, but not a medical procedure that would eat up a quarter of their income.

A recent study found that it would actually be cheaper for the Ontario Health Insurance Plan to cover IVF than to continue the current user-pay system.

That's because parents going through IVF tend to get more than one embryo implanted to boost the odds of one going to term. But with IVF improving, more embryos are surviving to birth – leading to a jump in multiple births.

And because multiple birth children tend to have more medical problems throughout their lives, they require more from the medical system.

Health economics analyst Lindy Forte found that each multiple birth child costs medicare an extra $598,000 over its lifetime. Because of that, she says, funding single-implantation IVF cycles would save the Ontario health care system up to $130 million a year.

Beverly Hanck of the Infertility Awareness Association of Canada says any funding of IVF would include limits on the number of embryos being implanted.

"The ultimate goal is one healthy baby," she says.

Back in Tilbury, Bulley-Arbos says it's not just prospective parents who suffer in cases of infertility.

When her brother and his wife found out they were having a child – before Bulley-Arbos was pregnant – he was reluctant to share the good news for fear it might hurt his then-struggling sister.

Likewise, she says, her parents were "devastated" by the troubles she was having becoming pregnant.

"It's not just my husband and me," she says.

Bulley-Arbos says she is trying to give "something back" for all the community support she received in her efforts to get pregnant, and has dedicated herself to pushing for full IVF funding in Ontario so that any woman can become a mother.

"My story has a happy ending," she says. "Not everybody gets their happy ending."

A parenting fitness test?

Some people already have the right to be parents – those able to have children without medical help.

Medical ethicist Udo Schuklenk of Queen's University says a couple's right or fitness to be parents tends to only be raised for those such as infertile or gay couples who can't bear children on their own.

No one, he says, tells a couple that is capable of bearing children that they have no right to do so. And yet newspapers regularly carry stories of parents unwilling or unable to properly care for their children, as well as terrible stories of abuse and neglect.

"Would it not make sense to check whether people are actually fit to be a parent?"

Such tests already exist, he says, for couples trying to adopt children, who must submit to criminal and income checks. Medical tests could also be done to ensure disabilities are not passed on, he says.

He admits, however, that there would likely be a strong reaction to such an idea, as it would raise the spectre of eugenics and selective breeding.

"I can see how what I am saying can be misconstrued," he says. "But if we are really concerned about the welfare of children ... it makes sense for the state to look at these sorts of issues."

- Stuart Laidlaw

... and the link to the IVF user site (it seems that that's what it is): http://forums.weddingbells.ca/showflat.php?Cat=0&Number=3744872&Main=3744538

Human dignity and individual liberty

There is an argument going on among well-intentioned and more or less knowledgeable bioethicists about the question of whether there is much use in deploying the concept of 'human dignity' in resolving conflicts about normative questions in the field. Here is a good critical take on the issue.

Typically the issue of dignity is wheeled in by opposing sides when they don't like the stance held by the other side, and they have no good arguments left to defend their own take on the matter. Here's a few examples: voluntary euthanasia and physician assisted suicide. There's opponents of physician assisted suicide and voluntary euthanasia who claim that such means to end a persons life are not dignified. Certainly the Roman Catholic Church thinks so. If you know anything at all about this debate, you will know that 'Death with Dignity' is also the battle-cry deployed by voluntary euthanasia groups. The same concept is used without blushing by groups for diametrically opposed means. That's odd indeed.

Up to this point I talked about the concept of dignity as if there was one. Of course, if neither the euthanasia folks nor the anti-euthanasia folks are able to demonstrate that the other side is wrong in their use of the concept of dignity, quite possibly there is something wrong with the concept, or, more to the point, quite possibly there's no concept.

Is voluntary euthanasia the exception pointing to a small problem with the idea of 'dignity', or is there actually more evidence that 'dignity' might just be a vacuous motherhood-and-apple pie thing suitable for and against anything and nothing. Well, in fact, there's plenty of other examples. IVF and artificial insemination (to go the the other end of our lives) are in the same boat as euthanasia. Christians routinely argue (well, claim) that our dignity is violated if we use such means of modern reproduction, allegedly because it's against our nature to do so. Of course, they don't mean a matter-of-fact type nature, they mean their normative understanding of what our nature should be like. It is well known that people who require access to such means of reproduction think their their dignity as rational agents is violated if the state or others prevents them from exercising such a choice (gays and lesbians come to mind, for instance). Both sides deploy the idea of 'dignity' to advance their diametrically opposing stances! Odd indeed.

Pornography is another, and my last example. There is no consensus at all about the question of whether someone violates his her or dignity (and that of others) by watching or participating in the production of pornographic material.

The German enlightenment philosopher Immanuel Kant initially understood respect for someone's dignity really as respect for a rational, autonomous agent. In that sense, dignity is kind of a short for respect for autonomous persons. That probably is a sensible thing. All other things being equal, we should be respectful of at least the self-regarding actions autonomous beings wish to undertake. May be that is what we should be saying, however. Of course, since then religious folks and invariably the UN have stepped in with a deluge of dignity here and dignity there declarations and statements that resulted into dignity being reduced to a campaign tool for everything and nothing at all. Christianity, for instance, quickly removed the Kantian criteria of reason and rationality and agitated for embryos' dignity, and human rights related claims derived from those. In case of doubt the supposedly necessary respect for these embryos' alleged dignity was used to override women's interest in controlling what's happening with their bodies. The UN has declared, for no good ethical reason at all, that reproductive human cloning is dignity violating. This emperor certainly is naked! Human dignity, warm and fuzzy as it may sound, is a useless tool for advancing arguments on any of the relevant fronts in bioethics. This insight is true regardless of the substantive stance that you'd take on any of these controversial issues, by the way. Dignity really is just a rhetorical tool as opposed to a serious conceptual means to advance discussions on these issues.

Today we are probably well advised, should we face the need to make a snap-decision, to reject dignity related claims unless these claims have another rationale attached to them that is based on some other framework. If anything, you'd probably right if you assumed that more often than not human dignity is deployed as a means of preventing people from making self-regarding choices.

Frozen embryos and such things

Natallie Evans and her that time partner Howard Johnston decided to conceive a child by means of IVF. As the BBC reports, 'Ms Evans was diagnosed with ovarian cancer in 2001, but six of the couple's fertilised embryos were frozen and stored prior to her treatment.'Well, as so often in the real world, there's no happy ending to this story. Ms Evans and Mr Johnston split up and each went their own way. Mr Johnston, however, wanted the frozen embryos destroyed, while Ms Evans wanted them implanted in order to conceive a child. She is infertile due to the effects of her cancer episode and pointed out that this was her last chance to conceive a child. She took the case through the legal instances in the UK as well as in the EU and saw her appeals rejected by every single court. Her arguments were that she wanted her own children and that the embryos had a right to life. The former argument is a classic case of question begging, because even if we agreed that she had such a right, it's unclear why it is Mr Johnston's responsibility to supply the genetic material for this purpose. And the embryos supposed 'right to life', well, while I don't agree with the very idea that embryos have any rights at all, let's suppose they do (ie for the sake of the argument). Surely Mr Johnston could always maintain that the embryos should then not be destroyed but kept in the freezer in perpetuity. That way they wouldn't have their supposed 'right to life' denied, yet Ms Evans would also not be able to conceive of the children she desires so badly. In case you wonder why one could possibly think that embryos (see photo to the left) don't have a right to life ... well, I wonder why any one could think that something has a right to life that has no central nervous system, no brain, no capacity to suffer, no sense of his/her past/future, and indeed no wish to be alive.

On a more serious note, however, I wonder what drives Ms Evans' somewhat fanatical approach to this all. Why does she insist on carrying a baby to term that she began producing with her ex-partner (who wants to have nothing to do with her any longer). I mean, if she so badly wants a baby, why not adopt one? Similarly, Mr Johnston... I'm tempted to say 'get a life mate' or 'get real', and 'why don't you let her have her way'. All that he contributed was a tiny bit of genetic material. What would be the big deal about letting her have her way provided a deal is signed that establishes that he won't incur any costs and responsibilities (and rights) in terms of the kid(s) up-bringing. End of story. It all seems rather petty.

Those slippery slopes - cloning babies

The reproductive cloning debate was undoubtedly 'won' by Luddites. You can tell already that I do believe that the other side of the argument deserves our support. What interests me in this context is how a slippery slope argument has been deployed by my learned Luddite friends against therapeutic cloning research. Of course, the Luddites have long been railing against therapeutic cloning research because it relied on the destruction of human embryos. Virtually all of these embryos are surplus IVF embryos (ie they would have been flushed down the sink anyway). I never understood the logic of this argument, because the embryos in question were at a developmental stage of about 10-14 days after conception. There is no central nervous system, brain, suffering, nothing in other words that should make us pause and ask whether the destruction of such an embryo is something to be concerned about.

I digress. What I really meant to focus on in today's commentary is a slippery slope argument. Those against therapeutic cloning research argued that if we permitted therapeutic cloning research we would slide down the slippery slope to the reproductive cloning of human beings.

There are two problems with this argument:

1. There is no straightforward slippery slope from therapeutic cloning research to reproductive cloning research. Those using this kind of argument consistently fail to provide evidence for their claim. - So, really the word 'cloning' has been deployed here as a bogey woman in the Luddite fight against progress in biomedical research.
2. Secondly, the Luddite rhetoric also begs the other question, namely what would be wrong with reproductive human cloning if we were capable of doing it? Surely the argument against reproductive cloning needs to succeed first in order to deploy the slippery slope related concerns against therapeutic cloning. To my mind, there are no serious reasons against reproductive cloning. It would simply give a few hundred or a few thousand people worldwide another means of non-sexual reproduction (eg infertile couples for whom IVF failed could access cloning to have a genetically linked child). In fact, there could be a good medical reason for this. What if a loving couple with a desire to have their own genetically linked child runs a serious risk of passing a genetic illnes on to their off-spring. Reproductive cloning would permit to eliminate that risk by using only the healthy parents genetic material. Good news all round, I would think, but then, hey, my initial isn't 'L' for Luddite.

Of course, none of this suggests that reproductive cloning should be a research priority (there is bigger fish to fry on the health front, just think TB, Malaria, HIV). In fact, considering the millions of orphans in need of loving homes, this pre-occupation with having our 'own' genetically linked kids has always struck me as obscene. However, from this observation it doesn't follow that therefore we should outlaw reproductive cloning.