The Malta Independent 20 August 2018, Monday

IVF law: woman born of anonymous donor conception views concession on medical history as ‘token’

Helena Grech Sunday, 29 April 2018, 08:08 Last update: about 5 months ago

A woman born by anonymous donor conception, Dr Joanna Rose, views the Maltese government's offer to allow those born through the same practice to have access to their genetic parent's medical history as more of a "token".

Rose is an activist who works to highlight the plight of those born by anonymous donor conception, resulting in identity issues and medical issues as a result of having incomplete access to the genetic family's medical history.

Born in the UK, Rose went to university and after she graduated, she was awarded a scholarship to get her PhD on the subject.

Anonymous donor conception is when sperm and/or eggs are donated to an infertile woman seeking to become pregnant through IVF. Parliament is set to discuss amendments to the 2012 Embryo Protection Act which would introduce embryo freezing and tie it to anonymous embryo adoption.

Currently, Malta's IVF laws allow a heterosexual couple to have up to two eggs fertilized with both embryos implanted in the womb. The government is seeking to allow three eggs to be fertilized with one being frozen. Should the woman not use the third embryo, she is obliged to allow that embryo to be adopted by a third party. Nobody is permitted to avail him or herself of the third egg being fertilized and frozen without consenting to adoption in the case that the embryo is not used under the current amendments.

In addition, IVF would be open to homosexual couples as well as single people, therefore necessitating the introduction of sperm and egg banks. The government is also seeking to decriminalise altruistic surrogacy with a consultation period expected to be launched on the issue.

Rose's particular concerns, having first-hand experience, is the aspect surrounding anonymity of the genetic parents in the entire process.

"One of the reasons why I am involved is because this is a huge social experiment that has been taking place for over 100 years in different countries.

"There are all sorts of people who have spoken out about various aspects. What is super clear is that donor offspring have raised awareness about the anguish and pain it has caused them."

Rose spoke of a previous occasion when she was in Malta speaking about this issue. She was invited to speak at a Parliamentary committee in November 2017. Rose described her feelings of frustration and how she had been insulted by the implication that her concerns were only limited to her.

She said that the government's medical adviser, Dr Mark Sant, had implied that this was just her personal issue and "everyone else was fine". He had insisted there was no empirical evidence to back the statements she was making about the negative fallout of anonymous donor conception.

"One of my best friends Narelle Grech died and had become public about the fact that she was donor conceived and did not know her medical history. She was diagnosed with stage 4 cancer, she had eight siblings in various families and could not legally inform them that they were predisposed to the same cancer."

Rose was speaking about her close friend from Australia who got to know who her genetic father was, who happened to be Maltese, eight weeks before she passed away. What happened to Narelle Grech resulted in a law being passed in Victoria, Australia - the name and birthdate of donors will be released to biological children, regardless of donor consent. The law was also enacted retrospectively.

"I cannot believe or stand the fact that Malta could introduce anonymous donation after such a beautiful woman, who is Maltese, has a law against that practice."

Having access to the medical history

One of the strongest arguments against anonymous donor conception is the lack of access to a child/adult's genetic medical history. Many illnesses have genetic components and it is imperative for an individual to know what to look out for, what they are vulnerable to and what the risk factors are.

Asked about this when unveiling the government proposals, Health Minister Chris Fearne had said that in the case of a child born by anonymous donor conception is sick, the adoptive parents would have access to the genetic parents' medical record, and when that child turns 16, it would also have access.

When addressing this with Rose, and asking if it appeases many of the concerns she has, she remarked that this is a kind of "token".

"It does not appease my concerns. This is what they were saying in Parliament. The only aspect of the best interest of the child they were prepared to engage with was the medical history. It looked floppy to me and more of a token.

"What I have seen throughout the world when my friends uncovered who their fathers are the lies. Friends found it was the gynaecologist themselves who donated, or their husband or sons were the donors. A friend discovered his father lied because he suffered from schizophrenia and did not include it in his medical history.

"It is the tip of the iceberg. It simply does not register when you think about the best interest of the child on the one hand and on the other having this legislative wall of secrecy, where apparently the figures of righteousness and greatness are going to pass on information when you need it.

"When you see this information in the hands of doctors, it is not squeaky clean. This industry has a lot of money involved all over the world.

"Why would somebody who is an anonymous person update their medical history? What is their incentive for doing that if they are told they have no emotional or personal responsibility for their own genetic children. Why would they have that little responsibility there? It is a strange notion about how the genetic parent will respond to their responsibilities to their own genetic offspring in this one instance.

"Looking at this industry and what happens across the world, it does not appease my fears at all. It is common for donors from abroad to be used. Truly, how well are people screened? The screeners are the clinics themselves who have a financial interest in collecting gametes. There have been people who have died and their sperm was used regardless.

"We cannot trust a system that is secretive and be placated by notions that everything will be handled well."

Rose then described how elsewhere, what she has seen are industry players in the infertility industry actually enter government and end up governing themselves.

"They come up with laws that change the definition of the best interest of the child to suit themselves. Instead of having benchmarked standards about what the best interest of the child is, we get something else. I have looked at draft legislation in Ireland, where there is a proposal to reframe the welfare of the child as: 'the welfare of the child will be taken into consideration where practicable".

Photos by Michael Camilleri

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