Dispossessed and forgotten: the new class of genetic orphansBeing a mother or father used to be the only bond you could not break -- until the arrival of reproductive technology.
The United Kingdom legislation governing in vitro fertilization (IVF) is currently under review. According to Baroness Deech, former chair of the UK Human Fertilisation and Embryology Authority, "the issue that uncovered the deepest feelings in the evidence received by the parliamentary scrutiny committee is the rather mild provision in Section 13(5) of the 1990 Human Fertilisation and Embryology (HFE) Act that 'a woman shall not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment (including the need of that child for a father)'. The Government proposes to remove that requirement." One likely reason promoting that change becomes apparent when we learn, as journalist Nicole Martin reports in the London Telegraph, that "lesbians and single women are on course to become the largest group to have donor insemination, new figures from the [UK] Government’s fertility watchdog suggest. They accounted for more than a third of women (38 per cent) who had the treatment last year, compared to 28 per cent in 2003 and 18 per cent in 1999, statistics from the [UK] Human Fertilisation and Embryology Authority (HFEA) show. If the upward trend continues, which fertility experts predict, most children born through donated sperm could be fatherless within the next few years." Ironically, at the same time, the recent prohibition in the UK of donor anonymity has created a shortage of men willing to donate sperm and conflicts with the wishes of women, including lesbian and single mothers, who do not want their child’s father to be identifiable or involved in any way with the child. New Zealand has a "world first" requirement governing the donation of human embryos "left over" from IVF, that embryo donors and recipients may choose each other from anonymous profiles and then, among other requirements, must meet during the process of donation. According to Ken Daniels, a professor of social work at the University of Canterbury in Christchurch and Deputy Chair of the New Zealand Advisory Committee on Assisted Human Reproduction, "the basis for this approach is that the children will grow up knowing their genetic origins and probably both sets of parents and their sibs --this is a matter to be discussed and agreed between the parties--and it is important that the two sets of parents have agreed on how to meet the needs of the offspring… [Children have a right] to know about their genetic origins". Clearly, Daniels is using the word "know" in a much broader sense than just factual information. Amid much controversy, the Australian state of Victoria’s Infertility Treatment Authority (ITA) is considering whether to follow the New Zealand approach and allow couples who are donating embryos to choose the recipient parents. It’s reported that "as part of the donation process, couples would be required to meet with prospective parents, making embryo donation in the state more like adoption". Louise Johnson, chief executive of the ITA, said that, "the ITA -- in considering any changes to its guidelines [regarding embryo donation] -- would need to think first about the welfare and interests of children to be born". Spokespersons for some infertility treatment clinics oppose such requirements as just "another barrier in front of these couples who are trying to have a family". Embryo donation/adoption raises difficult ethical issues: leaving aside the ethics of creating the embryos that become "leftover" from IVF, is it ethically preferable to give such embryos a chance at life by permitting their "adoption" or to allow them to die? Either alternative is ethically preferable, in my view, to using them in research or as sources of stem cells. It merits noting, here, that recent advances making ova cryopreservation possible raises the issue of whether creating "spare" embryos can now be ethically justified. Previously only sperm or embryos could be preserved through freezing. Two Australian researchers, Giuliana Fuscaldo, a bioethicist, and Sarah Russell, a scientist have been studying embryo donation. They entered the public square debate in the state of Victoria, in support of donating embryos, in an article, "The politics of test-tube parenthood" (The [Melbourne] Age, 3 September 2007) that generated substantial response from both inside and outside Australia. They argue for adults’ rights not to be discriminated against in having access to reproductive technologies or donated human embryos. They focus almost entirely on adults and their rights to become parents and found a family, to the exclusion of any consideration of the needs and rights of those who would be born. That’s a classic politically correct approach, but it’s only one side of the coin of the factors we should consider. In particular, we must also ask: What are society’s obligations to the children who will make up these families? In deciding that we can listen, first, to first hand experience. Recently, a growing number of these children, who are now adults – they call themselves "donor conceived adults" -- have been speaking out forcefully against the way in which they were "brought into being". And, contrary to breezy dismissals, such as Fuscaldo’s and Russell’s, of the importance of genetic relationship, they are telling us it’s very important to them. They describe feelings of multiple losses as a result of being "genetic orphans". One person summed this up very powerfully by explaining, "genetic relationship’s fundamentally important because it’s not like a contract that can be set aside; it’s the only bond you can’t annul." Their feelings mirror those of many adult adoptees who have spoken poignantly about the loss of genetic kinship inherent in adoption and who have lobbied hard and largely successfully to open adoption records in Canada. (By contrast, sperm, egg and embryo donation is still carried out here with the donor almost always remaining anonymous.) In short, genetic relationship goes to our deepest roots of who we are and to whom we bond. One has only to look at one of the primary uses of the internet – genealogical research – to see how important it is to most of us to know who we come from. And those bonds are not just to parents, but also to brothers and sisters and other genetic relatives. We have ethical obligations to heed these sentiments. The ethical doctrine of anticipated consent requires that when a person seriously affected by a decision cannot give their consent to that decision, we must ask ourselves whether we can reasonably anticipate that if they were present they would consent. If not, it’s unethical to proceed. Many donor conceived adults are telling us they would not have consented to the way in which they were "brought into being" and the family structure in which they grew up. The much larger question raised is whether, given the fact that we can now disintegrate parenthood into its genetic, gestational, social and legal components, it is ethically acceptable to do so, as some people blithely advocate. I propose that it is not ethically acceptable and that to do so is seriously harmful to children and to society. People who see no ethical problems in separating the components of parenthood found that view on a recently articulated principle that the definition of what constitutes a family should be simply a matter of adults’ personal preferences. For instance, Fuscaldo and Russell support embryo donation precisely because "it allows the possibility that people can negotiate what makes a family and who is a parent". In stark contrast to the traditional natural family, which is founded on biology, this approach involves, as Fuscaldo and Russell propose, "abandoning biology", that is, unlinking parenting and family structure from biology. That allows for many different types of family structure, for instance, same-sex parenting (and endorses the claim of advocates of same-sex parenting that "genderless parenting" is as good as, or even better than, opposite-sex parenting); multiple parents (as Fuscaldo and Russell recommend); and polygamy (which can then be viewed as just another alternative adult preference regarding family structure). Unlinking parenting and family structure from biology also favours the unrestricted use of donated sperm, ova and embryos, and of reproductive technologies (it implements the claim to "absolute rights to reproductive freedom" which is often coupled with a claim to "reproductive privacy" which favours anonymous sperm, ova and embryo donation). In justifying the acceptability of multiple parents, Fuscaldo and Russell conclude that, "after all, we have known for a long time that ‘it takes a village’ [to raise a child]". Understood in another sense, that statement raises an immensely important question that has barely been asked, let alone adequately addressed, in the public debates of issues which have impact on children, parenting and family structure: what do we, as societies (villages), owe to children in terms of our complicity and assistance with their "coming into being" and in creating the family structures in which they will grow up? We’ve also "known for a long time" that, in general, children do best when they know their biological mother and father, and are reared by them within their own immediate and wider biological family. I believe that should remain the societal norm, with any exceptions requiring clear justification. As the examples discussed above show, what constitutes such justification now needs to be examined in a variety of situations. It is one matter, ethically, when children are not reared by their biological parents in their biological family because of accidental circumstances or as a result of entirely private action. It is quite another when that outcome is deliberately planned and society, through its support, funding, institutions, and public and social policies, is complicit in its realization. Margaret Somerville is founding director of the Centre for Medicine, Ethics and Law at McGill University in Montreal. Her most recent book is "The Ethical Imagination: Journeys of the Human Spirit". |
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Comments (15)
That Lesbian Down The Street said...Genetic connections with parents are important, huh?
Well here’s what I have to say.
Absolutely correct.
“But what? But how can you say such a thing?”
Here’s the deal. We all know that genetic experimentation -is- a fact of life in today’s society. Any religious fundamentalist group will be opposed to that, but they’ll become what the Amish are now: a tiny little sect living in blissful ignorance of the rest of the progressed world.
You may or may not have heard of Kaguya, the mouse named after the Japanese Goddess. She’s a female mouse, and one with an important distinction.
She’s connected with both of her parents genetically. Only thing is… both of her parents are female.
That’s right. The genetic material from two females was joined the same way a sperm and an egg would join. The kinks are still being worked out, but… it’s the height of lunacy to completely rule out its practice with humans one day.
That said, it will only be a matter of time before lesbians can have children of their own, without input form any sort of male donor -at all.- And when that day comes… well, there’ll be a lot of unhappy religious fundamentalists^^;;
But hey, at least then we’ll be connected genetically with our children^-^ And by the content of this post, that’s -clearly- a very important thing to have, right?
I’ve said it before, and I’ll say it again. Have fun in twenty years^-^ The world is changing, and if you don’t change along with it, you’ll be left behind.
-- | Tuesday, 18 September 2007 at 10:07 pm
Mariusz Wesolowski said...Canada’s future lies not with these “progressives” and “liberals” who believe in “core Canadian values” (whatever they may be) but mostly with the Third World immigrants who still believe in common sense and physical reality, and who still make babies the natural way. Ironically, it will be they and their descendants who will support the aging “liberals” in their last days of life.
Canada | Tuesday, 18 September 2007 at 11:01 pm
Jim said...Thanks Margaret for the thought provoking article.
It is troubling to think about many of the concerns you have brought together. There is all the appearance of a modern day Pandora’s box.
“The much larger question raised is whether, given the fact that we can now disintegrate parenthood into its genetic, gestational, social and legal components, it is ethically acceptable to do so, as some people blithely advocate. I propose that it is not ethically acceptable and that to do so is seriously harmful to children and to society.”
I agree whole heartedly with your proposal. I also think it is noteworthy that we see perplexing situations occurring in all the component(genetic, gestational, social and legal) areas. For example, “donor conceived adults”—have been speaking out forcefully against the way in which they were “brought into being”.
United States | Wednesday, 19 September 2007 at 6:52 am
A Neighbor of That Lesbian Down The Street said...I’m surprised that my neighbor would be all for manipulating the nucleus of a female egg to make it more male-like and thus trick it into developing a-la Kaguya. All that with a failure rate of 99.8% in the mouse; the odds are likely to be much much worse in humans. Help me to understand why one would want to do this? Things get said quickly, but is it asking too much to hope for a reasoned response rather than what appears to be an intoxication with the idea of “LOOK WHAT I CAN DO”?
-- | Wednesday, 19 September 2007 at 9:49 am
Barty said...I’d like to comment on Kaguya, the mouse named after the Japanese Goddess. As the comment said, “she’s a female mouse,sand one with an important distinction.”
I say that we as humans, also have an important distinction-- that we are humans. And Kaguya and I are different. That’s ‘her’ nature as a mouse. 1+1=2 for Kaguya, won’t necessarily be the 1+1=2 for humans.
Philippines | Wednesday, 19 September 2007 at 10:23 am
Lauren said...Is it really such a fundamentalist’s question? If the proposition is that a person has dignity regardless of their orientation, should we be so callous to play darts with the dignity of children who do not have the ability to speak for themselves?
United States | Wednesday, 19 September 2007 at 1:59 pm
JonathanR. said...“I’ve said it before, and I’ll say it again. Have fun in twenty years^-^ The world is changing, and if you don’t change along with it, you’ll be left behind.”
Or, left standing. In twenty years, all these fools will be on the last leg of their journey into the abyss. Glad to be left out of that one.
-- | Wednesday, 19 September 2007 at 2:32 pm
We have the technology... said...There appears to be a consistent thread which runs through the various developments in reproductive “rights”: the right to have a child; the right to choose a childs gender; the right to design a child; the right to terminate a child if it appears flawed; the right to terminate a child because it’s inconvenient; the right to deprive a child of its father. They seem to concentrate solely on the “rights” of the adult with little or no apparent consideration for the childs welfare. This is progress?
Australia | Wednesday, 19 September 2007 at 9:13 pm
Sapphire said...I’m pretty happy that someone has come to the same conclusions I have, regarding Kaguya… Now all we need is a geneticist courageous enough to withstand a lot of angry religious banter^-^
Too bad some people disagree, but even *worse* that those people’s arguments are, to quote Monty Python’s Holy Grail, “right out!”
To the neighbor of TLDTS, and also barty… Uh, of course a mouse is not a person. and of course, the same procedure used with Kaguya wouldn’t work with people, at least not without being fundamentally altered. Let’s take a look at your arguments, respectively… we have:
“All that with a failure rate of 99.8% in the mouse; the odds are likely to be much much worse in humans.”
and
“1+1=2 for Kaguya, won’t necessarily be the 1+1=2 for humans.”
Well… that’s true. It’s *also* true, however, that all medical proceudres are first tested on animals, and that close to all medical procedures *also* have enormous failure rates before they’re ready to be used in humans. Look up the origin of organ transplant: that got of to a *terrible* start, but people kept trying and making it better, and now medical professionals the world over practice it.
Would you argue that a child born of two mothers is less human than a child born from heterosexual parents? If so, you’ll be guilty of the next holocaust, because this procedure *will* happen one day, and you *will* have to swallow your objections… unless hatred of children in the name of god has become acceptable.
Pretty much, in short, It’s not that people are arguing against the procedure… it’s that the arguments are so ridiculous. Make an argument against it if you’re gonna, but at least keep it intelligent?
(and ps, to JonathanR, your view is entirely subjective, so good luck to you^^ we’ll know in twenty years.)
-- | Wednesday, 19 September 2007 at 9:41 pm
Jack said...The biological/natural family has always been mother, father & child. Today’s reckless social experimentation is nothing less than an attempt at a revolution against man’s own nature. It will be as destructive as the communist revolutions which attempted to change the nature of man.
This revolution is championed by homosexual advocacy groups trying to cow (by conveniently dismissive claims of bigotry, fundamentalism, and backwardness) people into not merely tolerating their behavior, but into acctually condoning it against their own moral conviction.
Society used to call homosexuals by a derogatory terms and outcast them, then people decided this wasn’t Christian and for the most past have welcomed them into society and begun treating them with respect they deserve as men and women in the image and likeness of God.
Homosexual advocates know that the majority of humanity has and will continue to judge their behavior (if not themselves) as being sinful and unnatural. They will always be in a profound minority unless they can unnaturally perpetuate (or perpetrate) their abberant sexual deviancy on future generations.
The homosexual advocates gleefully turn to this revolution in the hopes that it will allow them to create an alternative society of misfits where they delusionally believe they will not confront their own moral autonomy by a removal of society’s nearly universal condemnation.
They dismiss the vast majority of mankind who would rationally judge their experiment as dangerous as ignorant bigots. Attempted rational discourse with such people, who have such a limited sense of self worth that they conflate their identity with their sexual behavior or with goddesses, is bound to make you sound like someone attempting to reason with a screaming two year old child who wants his way. It makes you look silly. Since spanking is not in order, it is far better to ignore them than to flatter their bullheaded commitment to sodomy.
United States | Thursday, 20 September 2007 at 4:22 am
A Neighbor of That Lesbian Down The Street said...In the field of Medicine we strive to treat disease or illness and in Medical Research we strive to develop new therapies to treat disease or illness. Hopefully, most if not all of us see that as right and good. When we discuss areas of medicine where disease or illness is not present, the practice of medicine becomes different such that the patient isn’t sick and the doctor hears “I want ….. you fill in the blank”. So, whether it be “genetic orphans” or “babies without men” from a medical perspective what is the disease, illness or unmet medical need? In both the above cases my take is that “we” are trying to make something happen that was not meant to be or would not have happen via nature. I think that we are asking for problems if not manufacturing them outright whenever we don’t ask these questions … is it right and good.
-- | Thursday, 20 September 2007 at 11:04 am
Mariusz Wesolowski said...On pages 575-576 of his novel “State of Fear” (Harper Collins, 2004) Michael Crichton writes about a social movement which had risen to prominence about a hundred years ago. Its supporters included the presidents Theodore Roosevelt and Woodrow Wilson; Sir Winston Churchill; Alexander Graham Bell, the inventor of telephone; famous writers H. G. Wells and George Bernard Shaw and, in Canada, Tommy Douglas (the father of Medicare) and three out of the Famous Five pioneers of feminism: Emily Murphy, Nellie McClung and Louise McKinney.
Crichton writes:
“Nobel Prize winners gave support. Research was backed by the Carnegie and Rockefeller Foundations. ...important work was… done at Harvard, Yale, Princeton, Stanford, and Johns Hopkins. Legislation to address the crisis was passed in states from New York to California. These efforts had the support of the National Academy of Sciences, the American Medical Association, and the National Research Council. It was said that if Jesus were alive, he would have supported the effort… Those who opposed the theory were shouted down and called reactionary, blind to reality, or just plain ignorant.”
What was this exciting and progressive idea? Eugenics - a movement to prevent the breeding of the inferior human beings (immigrants, Jews, blacks, the mentally ill, etc.) by isolation in institutions, or by forced sterilization. Eugenics achieved its maximum popularity in Nazi Germany, and was successfully practised in places such as Auschwitz.
Crichton continues:
“After World War II, nobody was a eugenicist, and nobody had ever been a eugenicist.”
Twenty or so years from now, when the current scientific foolishness brings its poisonous fruits, how many people will be proud of their past support of it?
Canada | Friday, 21 September 2007 at 6:04 am
Charlotte Hoare said...Don’t want to sound like a preacher but I thought the following was rather prophetical:
“....I am only making clear what Man’s conquest of Nature really means and especially that final stage in the conquest, which, perhaps, is not far off. The final stage is come when Man by eugenics, by pre-natal conditioning, and by an education and propaganda based on a perfect applied psychology, has obtained full control over himself. Human nature will be the last part of Nature to surrender to Man. The battle will then be won. We shall have `taken the thread of life out of the hand of Clotho’ and be henceforth free to make our species whatever we wish it to be. The battle will indeed be won. But who, precisely, will have won it?
For the power of Man to make himself what he pleases means, as we have seen, the power of some men to make other men what they please.’
C.S. Lewis ‘The Abolition of Man’ 1947 (chap.3)
The whole book is recommendable (short too).
New Zealand | Friday, 21 September 2007 at 2:45 pm
David Page said...Margaret Somerville said: “In short, genetic relationship goes to our deepest roots of who we are and to whom we bond. One has only to look at one of the primary uses of the internet – genealogical research”
Genealogy doesn’t make much sense. Just to go back to the time of the pilgrims we each have over 1,000,000 ubergrandparents. Most people follow a narrow thread to prove relation to a famous person we’re probably all related to anyway. That’s what’s wrong with The DaVinci Code idea of a blood line started by Christ. If it were true we’d all be related to him.
The author seems to be saying that ‘donor conceived adults’ would prefer not to exist. She also seems to imply that adopted children are not as loved as children born to their parents. I’ll bet lots of people would say otherwise. I knew a woman who said she couldn’t raise children she didn’t give birth to. I considered it a character flaw.
United States | Thursday, 15 November 2007 at 10:25 am
brenda said...I admire Margaret Somerville. The things need to be said. The reason will become apparent. All these lost souls out there “doing the crime & time” because they have no genetic heritage...... All of society suffers. Those who say they can raise only birth children are far greater in number than just one - it relates often to their own early upbringing/lack. I’m adopted, & this has caused me to feel similarly. There’s a difference between social & genetic family in ways that most with two families can relate to - & many aren’t able to tell you diffences, they’re often those afraid to grow. The rat can tell us about mothering & genes & the change that takes place when a mother rears a biological baby rat versus no mother? Perhaps this story’s the same for humans, it would seem it has hallmarks. There are families with bad mothers & others with good ones? The experiment of closed adoptions is playing out again with all the secrets of anonymity in reproductive technology, & the result will not be pleasant. The extended family’s involved, grandparents, & uncles/aunts. The children in general, about 93%, want to know origin truth. Who’s going to get blame when this is hidden? Is society going to pay? You bet. Who’s going to be ditched when DNA test is taken & parents are found not to be? Will a younger generation be taking these tests as a matter of course to check? I would - so many parents are hiding secrets. Who’ll co-ordinate medical care when genetic family’s lost? There are many cases where medical information is vital. Every child needs genetic mother & father, & then go from there adding whoever you like if you have to, just tell them truth. Make sure all families have the same fairness in grandchildren. It’s very complex to be fair to extended family & to children created in these new ways! As humans we need to please our families to maximise our happiness.
Canada | Thursday, 10 April 2008 at 4:43 pm
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