Comment: Embryo 'adoption' programme shows why donor babies need to know 3 years ago

Comment: Embryo 'adoption' programme shows why donor babies need to know

A new style of family creation that sees couples 'adopt' embryos and, after the child is born, remain in contact with the donors is being hailed as the way forward for donor conception.

Embryo Adoption

Experts from the UK's University of Liverpool and University of Huddersfield have been examining the policies of the 'Snowflakes Embryo Adoption Programme', operated in the USA.

In 1997, an American pro-life Christian adoption agency discovered that thousands of human embryos were being stored in fertility clinics and began to connect couples who had stored embryos (that they did not plan to use themselves) with couples who could not conceive. The agency, Nightlight Christian Adoptions, also encouraged the couples to remain in contact with each other.

Dr Lucy Frith, a Bioethics researchers at the University of Liverpool; Professor Emeritus Eric Blyth of the University of Huddersfield, an authority on social work who has a long track record of research into infertility treatments, and University of Huddersfield senior lecturer Dr Steve Lui, who has a background working and researching in the field of embryology, looked at the experiences of some of the couples who have experienced the system.

The UK-based research team received some highly positive responses to the so-called 'Embryo Adoption Programme', that - so far - is only available in the USA and New Zealand. One such recipient, who had made contact with an embryo donor, commented:

"Not only were we given our daughter, but a whole family too - two families actually, or one big family."

The pairings have resulted in the birth of over 500 babies, and a number of the children have met the women and men whose genetic material they carry, and their full genetic siblings living in donor families. This summer, many of them will attend an event celebrating the 20th anniversary of the scheme.

Ireland Remains The Reproductive Wild West

Although no such legislation exists in Ireland, in the UK, children who are born as the result of egg, sperm and embryo donation have the right, once they reach 18, to ask the Human Fertilisation and Embryology Authority (HFEA) to disclose the identity of their biological parents.

As a result, the American programme has proven to be a valuable research opportunity for interested parties this side of the pond. The UK team hope to continue the project into the future, monitoring developments as the children who resulted from adopted embryos grow older.

Both recipient and donor couples who took part in the embryo adoption programme were given the opportunity to appraise the scheme and their feedback is extremely positive:

"To be able to have an open adoption so our children could know each other and we could watch our biological children grow up; that option was priceless for us."

"It is extremely important to us that some kind of contact is maintained with the adopting family. We would like our own children to know of their distant siblings, and, if possible, develop a relationship with them."

"We want our child to have a positive sense of identity. We want her to know her story and history (as complete as possible). Understanding her history and where she comes from will help her to understand who she is."

"We are all family now. No other questions or decisions are needed. They are great folks and the girls are sisters which is what is most important to me."

A Right To Know Is A Human Right

The authors are admit that the use of embryos provided by a third party for family building is a contested form of reproductive technology:

"A conditional programme of embryo donation, such as that which operates in New Zealand and of which 'Snowflakes' is an example, is even more contentious and couching embryo donation as adoption has caused controversy."

However, Dr Steve Lui, one of the researchers, maintains that an open adoption system could prove to be better because it enables children to learn about genetic factors that could be important for medical reasons:

"The issue of 'where do I come from?' is very important for the child in the long term. If you are open about it, then it won't come as a shock at a later point in their life."

As a psychologist who previously specialised in fertility, I agree with Dr Lui's stance and have written frequently on the topic of the rights of donor-conceived people. Although I am firmly pro-choice when it comes to all matters reproductive, I believe that donor-conceived children should be informed openly and honesty about their origins, and right from the beginning; there is no place for a 'big reveal' when it comes to someone's identity.

The unfortunate reality remains that a large number of Irish couples and individuals continue to seek treatment in fertility clinics abroad, meaning that they can (and do) opt for anonymous gamete donation. Meaning that we have no means of providing even basic medical information to donor-conceived people about their genetic heritage.

Secrets And Lies

My opinion on this is no secret. However, secrets remain the name of the game for many. For donor-conceived people to seek out their biological information, they must know the truth in the first place. Sadly, some don’t because their parents opt (for a variety of reasons that may seem logical at the time) to keep their donor-conceived status from them.

We must remember that donor-conceived children grow into adults. Adults who may, in the future, wish to know if they carry a breast cancer (BRCA/BRCA2) gene, are a potential carrier of the cystic fibrosis gene (CFTR), or ensure that they haven't accidentally entered into a sexual relationship with a half sibling.

Working with adult adoptees concreted my belief that family secrets, even those coming from a place of deep parental love and good intentions, are inevitably damaging. The longer a secret is kept about a person's true identity, the more harm it inflicts on everyone tied to it.