Ireland’s IVF children: an identity crisis?

Adoption was Ireland's 20th-century scandal. The rights of donor-conceived children could be its 21st-century equivalent

IVF: Irish children conceived with anonymous sperm and eggs will never know the full details of their genetic parentage. Photograph: Zephyr/SPL/Getty

IVF: Irish children conceived with anonymous sperm and eggs will never know the full details of their genetic parentage. Photograph: Zephyr/SPL/Getty

 

It is only in recent years that society has woken up to the trauma suffered by many adopted people through not knowing their birth parents. For many, greater openness has come too late: the wrong can never be rectified, as historical records are missing or may never have existed.

Is an analogous situation developing today for children conceived through the use of anonymous sperm and eggs? They will never know the full details of their genetic parentage, and, it is increasingly asserted, their identity rights will be compromised as a result.

“There is a growing understanding of the importance of a sense of identity for every person,” says Deirdre Madden, professor of law and expert in medical ethics at University College Cork. “It is not just about psychological wellbeing; there may also be health issues, for example, where genetically inherited diseases occur.”

The question has been around since Louise Brown became the world’s first “test tube baby”, in 1978; the first baby conceived in Ireland using IVF was born less than a decade later.

Brown was actually conceived in a Petri dish, using her parents’ egg and sperm, but as the technology has developed the use of donated material has become increasingly common.

Early donors were encouraged to give anonymously, and less thought was given to the rights of the resulting child

In the early days, when it was feared that few people would come forward, donors were encouraged to give anonymously, and less thought was given to the rights of the resulting child.

The influential UK philosopher Mary Warnock said that egg or semen donors should remain anonymous and should not know the identity of the couple they helped, in order to ensure that people were willing to be donors. Years later she changed her mind and recommend that children conceived using donated sperm be able to trace their biological fathers.

It was only as a generation of donor-conceived children were growing up that questions began to be asked about their right to information about their genetic parents. And it is only as these children have reached the age of majority – which in Ireland is only in the past decade – that these questions have acquired a greater urgency.

“Science has moved on since then, and so has society,” says Prof Madden. “We now have studies that show the importance of identity for children in adolescence, and the need for children’s welfare to come first. It follows that they should have a right to information about their genetic inheritance.”

Ireland’s delay

Yet although many countries have updated their laws on assisted human reproduction, and have banned anonymous donation, the Republic of Ireland has yet to join them.

A law has been passed providing for the regulation of donor-assisted human reproduction. The Children and Family Relationships Act 2015 bans anonymous donation and provides for the setting up of a “national donor-conceived person register”, so children can access information once they are 18.

Twelve years after an official recommendation that any child born via donated material should be able to identify the donor, this has still not come to pass

Two years on, however, the relevant parts of the Act have yet to take effect. There is still no sign of the promised register. Twelve years after a government-appointed commission recommended that any child born through the use of donated material should be able to identify the donor, this has still not come to pass.

A request to the Department of Health for a briefing elicited a one-line response saying that parts 2 and 3 of the Act will be commenced later this year.

In the meantime the popularity of donor conception continues to grow, as does the number of fertility clinics. No one knows for certain how many donor-conceived children are born in Ireland each year; the figure is likely to be in the hundreds.

The category embraces a wide range of altruistic and commercial arrangements reached in Ireland and abroad. Customers include couples and single people, both heterosexual and homosexual.

Most people go through a clinic, but it is relatively simple to buy sperm online and make your own arrangements. No official figures are gathered, and there is little oversight

Most people go through a clinic, but it is relatively simple to buy sperm online and make your own arrangements. No official figures are gathered, and there is little oversight.

Most of the sperm used in Irish fertility clinics comes from Denmark, where Cryos International, which operates the world’s largest sperm bank, says there have been at least 1,400 pregnancies among its Irish customers since 2000.

Until 2007 all the sperm Cryos sold to Irish donors was anonymous, as it was illegal for the company to use “nonanonymous” donors. Since then nonanonymous donations have increased year on year. In 2016 they exceeded anonymous donations for the first time. (Cryos points out that even anonymous donors may be identifiable through DNA testing. The distinction it makes is that it will never reveal the identity of an anonymous donor, whereas its nonanonymous donors have agreed that donor children can contact them once they turn 18.)

Cryos says that lesbian couples, and single customers, seem to prefer nonanonymous donors, and this is driving the trend rather than changes in legislation internationally.

Among heterosexual couples, where male infertility may be an issue, there has historically been a preference for anonymous donation.

“I wanted the donation to be open”

“Claire” is one of the customers who have successfully conceived – twice – using sperm purchased from Cryos. “People think you flick through a catalogue, looking for a particular type of donor, but actually it came down to a choice between three or four. I wanted the donation to be open, and the blood groups to match, and the donor had to be proven, with his own children.”

With a background in science, she was keenly conscious of the decline in a woman’s fertility that goes with the passage of time.

“At 36 I realised that even if I met someone it would probably take four years before we tried for a baby. I knew my chances of conceiving were going to be slim the older I got. Equally, it was going to take years to try to adopt.

“Yet I always wanted to be a mother. I would have loved to have a nuclear family. That didn’t work out for me, but it didn’t mean I couldn’t have a family.”

Her initial visits to a clinic revealed fertility problems. “I feel blessed now that I went, because it meant I found out quickly. It helped to convince me I was doing the right thing and I didn’t have much time left.”

It’s not just the physical and emotion toll; it’s also dearer for us, as we have to pay for the sperm donation as well

In-vitro fertilisation was a “really tough route” for a single woman, she says. “It’s not just the physical and emotion toll; it’s also dearer for us, as we have to pay for the sperm donation as well.”

It helped that her parents, in the west of Ireland, were supportive, as were neighbours and friends in her rural community. After two years of trying, Claire conceived on her second round of IVF and gave birth to a son. She now also has a baby girl, conceived with sperm from the same donor – “diblings”, as they are known.

Before their birth Claire was provided with diverse information about the donor: where he has travelled in the world, his taste in music, medical information, the fact that he is married. “Before counselling I hadn’t been aware there was a choice about anonymity. But I decided I wanted to leave the door open for my children for the future. I didn’t feel it was my choice. If they want to find their biological father I’ll help them.”

Claire is a member of the Single Mothers By Choice Ireland Facebook group, which serves as a forum for women to discuss issues they have in common. The group includes two women who have adopted children, but the rest used the donor-conception route.

The group has about 60 members, most of them professional women juggling childcare with their careers, according to “Janice”, the administrator. A separate “waiting” group, created as a forum for single women undergoing fertility treatment, has 100 members, she says.

Rights “play-off”

Not everyone shares the increasing sentiment favouring open donation. Dr John Waterstone, medical director of the Waterstone Clinic in Cork and president of the Irish Fertility Society, believes the proposal to create a register is a fad.

“In some countries they have lurched in the opposite direction. In Spain, for example, anonymity is enshrined in law. Both views are wrong, because they don’t allow people choice. We shouldn’t be forcing people who are pursuing this option to be either anonymous or identifiable.”

We shouldn’t be forcing people who are pursuing this option to be either anonymous or identifiable

Dr Waterstone says he is not against donor-conceived children being provided with medical and other information through their parents, so long as it is nonidentifying. There is always a “play-off” between the rights of parents and the rights of children, he believes.

“I’d hate to find that, if I had donated sperm, a 21-year-old son would come knocking on the door, saying, ‘Hello, Dad’. That’s when it can get messy.”

He asks whether it is fair on a couple who, unable to have a baby, embark on the donor-conceived option, and “then spend all those years changing nappies and waiting outside the teen discos”, to have a third person, the donor, “intrude” in their lives.

In Dr Waterstone’s view a child is not ‘hard done by’ by not knowing the full detail of his or her genetic heritage

In Dr Waterstone’s view a child is not “hard done by” by not knowing the full detail of his or her genetic heritage. The idea that donor-conceived children are entitled to know their identity is “utterly meaningless”.

Describing the Act’s proposal for a register as overly coercive and unconstitutional, he vows to challenge it legally if it is introduced.

A move to a nonanonymous-only system of donation would “kill off” egg donation in Ireland and prompt many couples requiring donated sperm to go overseas, to countries where anonymity is guaranteed, he says. “People want privacy in their reproductive laws, and they should get it.”

Prof Madden makes the point that although sperm donation rates dipped in countries where nonanonymous donation was banned, they tended to recover with time. This has been the experience in Sweden and the United Kingdom.

She says she has concerns about the new rules that will apply to donor-conceived people who seek their birth certificates when they turn 18. At this point they can apply for information about their donor, who has 12 weeks to object. The new rules provide for the person seeking a birth certificate to be informed of their status.

Prof Madden says for people who were never told by the parents who raised them that they were donor-conceived, this could be the first time they learn this information.

Some authorities have questioned whether this is an infringement of parental rights by the State. Irish law is “very unusual” by international standards, she says. “There is certainly a balance to be struck, but I’m not sure the method chosen is the correct one.”

It seems inevitable that cases involving the identity rights of donor-conceived children will reach the courts eventually, as surrogacy cases already have

Given the thorny issues involved and the lack of regulation, it seems inevitable that cases involving the identity rights of donor-conceived children will reach the courts eventually, as surrogacy cases already have.

Donor Offspring Europe, one of the biggest representative groups, says it has no members in Ireland, and staff say they do not know any donor-conceived people from this country.

The proposed register will apply only to children born after the date of implementation, leaving donor-conceived people born before it with no tracing rights if the sperm or egg donation was anonymous.

However, the increasing sophistication of DNA testing makes it possible for people to contact their genetic relatives.

The Donor Sibling Registry, which is based in the United States, helps people contact genetic relatives. It claims more than 50,000 members and says it has helped 14,000 half-siblings and donors get in touch with each other since 2000.

It claims that with DNA testing, Google and social media, anonymity is “a thing of the past”. A map on its website indicates that 53 of the people on its books have Irish addresses.

Such developments have caused concern among some parents, worried that their donor-conceived children might discover their origins through an online service.

But, as Prof Madden points out, the stigma that might originally have attached to these births is lessening over time, as society becomes more open. “The result is that people are more likely to feel more comfortable about telling their children about their origins.”

ANONYMITY: WHAT DO OTHER COUNTRIES DO?

IVF: clinics in Ireland must collect information when acquiring donor sperm or eggs, such as the donor’s name and address. Illustration: John Lund/Blend/Getty
IVF: clinics in Ireland must collect information when acquiring donor sperm or eggs, such as the donor’s name and address. Illustration: John Lund/Blend/Getty

There is no single universally accepted best practice internationally for offering donor-conceived children access to information about their genetic origins, according to Dr Donna Lyons of Trinity College Dublin’s school of law.

Some countries allow the release of information once a child reaches a specific age; others permit release based on the “sufficient maturity” or “best interests” of the child.

In Ireland the Children and Family Relationships Act 2015 requires clinics to collect information when acquiring donor sperm or eggs, such as the donor’s name and address. They have to provide this information for use on the proposed “national donor-conceived person register”, which will also contain information about the child and the intending parents.

Once the child has reached 18 he or she will be able to access information from the register about the donor and any siblings

Once the child has reached 18 he or she will be able to access information from the register about the donor and any siblings.

These provisions in the Act have not yet come into force; the Department of Health says this will happen by the end of the year.

Dr Lyons says 10 European countries and two Australian states have banned anonymous donations. In Norway and Finland, donor-conceived children are entitled to donor information at the age of 18. But Austria provides access at 14, the Netherlands at 16 and Germany, in principle, at “any age”.

In contrast, Spain, France, South Africa and the Czech Republic enforce anonymity when donors provide eggs and sperm. In South Africa, for example, a child born through artificial insemination may access medical and genetic information, but not identifying information, about their donor.

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