Dispossessed and forgotten: the new class of genetic orphans

Being a mother or father used to be the only bond you could not break -- until the arrival of reproductive technology.
Margaret Somerville | Sep 18 2007 | comment  



The latest census figures from Statistics Canada show a profound shift in family life. For the first time, married Canadians are in the minority and the numbers of common-law and same-sex partners, including those with children, and single parents have increased. Society used to give children a mother, a father and a family through traditional marriage. But in light of these statistics, what now are society’s obligations, if any, to children with respect to their parents, parenting and family structure? In a different context, that same question is at the heart of heated debates, at present, in several countries comparable to Canada: what are a society’s obligations to children with respect to their parents, parenting and family structure, when society is complicit in their coming into being by funding, supporting or regulating the reproductive technologies that are used to conceive them or they are adopted in accordance with the law?

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

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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