Genetics, identity and three-parent babies

If parents have a right to genetic affinity with their children, shouldn't children born of donor-conceived eggs or three-parent DNA also have the same rights?

Last year, I was in London attending a panel discussion on the subject of birth certificates - and how practices such as adoption and conception via donor sperm or eggs might change the way we see them.

One notable exchange occurred when a male panel member, who had children conceived with donor eggs, suggested that donor-conceived children should be required to provide a justification when requesting the state for information about their genetic parents.

He was swiftly rebuked by two members of the audience who were donor-conceived, and who insisted that it should be the automatic, unequivocal right of donor-conceived persons to access such information. It is not for anyone to ask why they are curious about their own parents or how such information might serve them.

I was reminded of this exchange when in March this year, Singapore's Court of Appeal became the first court in the world to award damages to a couple based on the loss of "genetic affinity".

The couple involved had used IVF to conceive a child, but it was only after the birth of the baby that they discovered that sperm from an unknown third party had been used to fertilise the woman's ovum, rather than her husband's sperm. One might say this was a case of accidental "donor" conception.

In its judgment, the court explained that the woman had "suffered a severe dislocation of her reproductive plans that is constituted principally by the fracture of biological parenthood". The desire to have a child of one's own with one's spouse was recognised as "a basic human impulse", and it is the loss of this outcome that the court was trying to address.

The court has, indeed, put its finger on something very real and profound. We may disagree with the way in which the court proposed to calculate damages (30 per cent of the financial costs of raising the child), but we would accept that there is real loss felt by the couple.

Genetic affinity is hardly an abstract concept but literally a flesh and blood issue.

After all, many of us implicitly recognise that genetic ties undergird our sense of identity, as well as the nexus of bonds and obligations within which we live.

We rely on genetic affinity for a basic picture of the world, although - as with birth certificates - we generally take all that for granted unless we are, say, adopted or donor-conceived.

GENETIC AFFINITY: A TWO-WAY STREET

But this raises an important question: If we recognise the desire of parents for genetic affinity with their children, do we accord the same recognition to the desire for genetic affinity with their parents that children also feel?

I am not saying donor-conceived children should sue their legal parents for damages. But their experiences should be taken seriously in ethical reflection about assisted reproduction and genetics.

We tend to laud advances in assisted reproduction for allowing would-be parents to have more options to achieve pregnancy. Prospective parents even have the freedom to dispense partially or wholly with genetic affinity through donor conception, for the sake of having a child at all.

But this reflects a very one-sided view of parenthood and genetics - centred on prospective parents' supposed "right to a child" - and, all too often, the testimonies of donor- conceived children are ignored.

Thankfully, the experiences of donor-conceived persons are well-documented.

The technical term, if you like, for the identity problems sometimes reported by donor offspring is "genealogical bewilderment". It attests to the fact that the "basic human impulse" for relatedness is both parental and filial: Children look to their origins to ground their identity.

On realising what they have been deprived of, donor-conceived persons may struggle to make sense of their identity and place in the world, longing for what is lost and unable to feel comfortable in their own skin.

It is tempting to suggest that donor conception is little different from adoption in this regard. But in a book entitled Who Am I?: Experiences Of Donor Conception, one donor-conceived person, Ms Louise Jamieson, writes about how this comparison is intrinsically limited.

After all, adoption takes place (or should take place) only when a child's natural mother cannot raise him - it is done for the child's best interests, while donor conception is done for the sake of prospective parents wanting a child. "Rather than protecting children who have become parent-less through unhappy circumstances," Ms Jamieson writes, donor conception "creates father- or mother-less children".

THREE-PARENT IVF AND IDENTITY

All this has serious implications for the two techniques often nicknamed "three-parent IVF", of which Britain became the first country to legalise in 2015. Last year, it was reported that Singapore's Bioethics Advisory Committee would hold a public consultation on the matter.

The two techniques - officially called "mitochondrial donation" in British law - make use of IVF at some stage of the process, and both require a donor egg with healthy mitochondrial DNA. However, they are radically different from standard donor conception.

The technical term, if you like, for the identity problems sometimes reported by donor offspring is "genealogical bewilderment". It attests to the fact that the "basic human impulse" for relatedness is both parental and filial: Children look to their origins to ground their identity.
‚ÄčOn realising what they have been deprived of, donor-conceived persons may struggle to make sense of their identity and place in the world, longing for what is lost and unable to feel comfortable in their own skin.

Essentially, any children resulting from these techniques will carry DNA from the woman who commissions the procedure, the man whose sperm is used for fertilisation, and the egg donor, who provides not just mitochondrial DNA but also almost her entire egg cell (except its nuclear DNA), which becomes the embryo's body after fertilisation. This explains the term "three-parent IVF".

To use the Court of Appeal's words regarding the IVF mix-up case, what happens in three-parent IVF is precisely the "fracture of biological parenthood" - this time, deliberate and calculated.

Additionally, in one of the techniques, the donor egg is fertilised first and the resulting embryo is then destroyed for "spare parts", that is, the healthy mitochondria and other parts of the cell, which are combined with nuclear DNA taken from another embryo. (This differs from the other technique, in which the donor egg and the commissioning woman's egg are combined first before fertilisation.)

If the experiences of donor-conceived persons are anything to go by, it is thus likely that the genealogical bewilderment felt by three-parent babies when they grow up will be at least as acute, if not more so.

For in three-parent IVF, something basic and constitutive of the child's very being is altered from the start. The absence of the egg donor in the child's life and the very strangeness of carrying DNA from three rather two persons may have long-lasting effects on the child's psyche.

It must also be noted that three-parent IVF, crucially, does not cure any existing embryo of mitochondrial disease. Rather, it seeks to create a child free of the disease, but who retains a significant genetic relationship to the commissioning woman or couple. Like conventional donor conception, it is a one-sided affair - supplying an "acceptable" child to meet the demands of prospective parents using techniques that fracture parenthood for the resultant children.

The recent IVF mix-up case should remind us that genetics and identity are no mere trifling issues.

And if we can accept genetic affinity as a valid concern for would-be parents, then there is no reason not to do so for potential offspring.

Thus, in considering whether three-parent IVF should be legalised or not, we should not forget the concerns of the children who would result from such techniques.


  • The writer, a Singaporean, is the education officer of the Anscombe Bioethics Centre, an Oxford-based research institute.
A version of this article appeared in the print edition of The Straits Times on July 07, 2017, with the headline 'Genetics, identity and three-parent babies'. Print Edition | Subscribe