WA authorities urged to help people born with donor sperm and eggs to find biological parents

Updated

You're sitting on a crowded train on your way to work, trying to focus on the day ahead, but you're distracted by a man sitting across from you.

Key points: For people conceived through donated sperm or eggs, finding information about donors is challenging

The information you can access varies if you were born before or after 2004

There is now a push to review these laws in WA to provide more information

He has similar colouring to you and is around the same age. Could he be your brother? Your cousin? And that woman sitting two rows in front — does she look a bit like you too?

For most people, these thoughts might seem strange, even a little paranoid.

But Perth woman Beth Wright — who was 16 when her parents told her and her half-brother they were conceived using sperm donors — knows the feeling well.

"It was years of looking at people on the train when you are out and about, wondering if you are related to them," she said.

The 32-year-old said the revelation left her with more questions than answers.

"I have type 1 diabetes, so people would frequently ask me if anyone else in my family had type 1 and I didn't know," she said.

"People would ask about your heritage, your ancestry — it was always a tricky question to respond to."

Health law expert Sonia Allan said it was common for donor-conceived people to seek information about their genetic heritage.

"A lot of donor-conceived people are interested in accessing information so that they know their medical history," she said.

"There is certainly also a risk, and the psychological impact, of not knowing who you might be related to.

"Many donor-conceived people that I spoke to said that they were very concerned about forming a relationship with somebody who might in fact be their half-brother or sister."

Online DNA service leads to 'mind-blowing' discovery

For West Australians like Ms Wright, conceived through donated gametes, finding information about the donor can be extremely challenging.

A few years ago she signed up to the state's voluntary donor conception register, but was told there was no "donor code" for her on record and therefore no information about her biological father.

Ms Wright said she was offered no support nor assistance to find him.

She spent the next three years exhaustively building family trees using an online DNA service, eventually identifying her biological father and using electoral records to track him down.

She sent him a letter and he phoned her two days later.

"It has been mind-blowing since then getting to know a bit about him, and therefore a bit about me," she said.

'It should be easier': Donor

Her father "Simon", who asked the ABC not to use his real name, made more than 90 sperm donations between the ages of 21 and 24.

"Financial reasons were the main incentive — I had moved out of home with some friends and needed extra cash to support myself," he said.

Simon said he never imagined he would meet any of the children conceived using his donated sperm.

"After Beth contacted me it was certainly slightly exciting and interesting," he said.

"I was happy to assist her with her inquiries. I don't think any boundaries have been overstepped and she has done it all appropriately.

"I certainly believe it should be made easier for donor people to obtain information about their donors, particularly with regards to health issues, family history, etcetera.

"It should be easier for them to access this information as it is useful for their health management, and their awareness and [their] identity.

"I'm not sure how many people I could have possibly conceived.

"I have not lingered long on the thought [but] I am open to meeting more people as long as my rights are respected and my wishes."

'Obstructive, difficult and insensitive'

While she eventually found her biological father, Ms Wright was frustrated by the process.

"There are so many obstacles in finding information that I believe you have a right to," she said.

"The whole process in dealing with [WA's] Reproductive Technology Council and the fertility clinics has been infuriating, really frustrating and invalidating. They are obstructive, difficult and insensitive.

"It has been quite traumatic having to put so much effort into trying to get this basic information … fighting to get basic information about who I am genetically connected to."

Ms Wright said she was still searching for half-siblings because the Reproductive Technology Council had told her it could not provide any information about them.

Based on the fact her biological father made 92 sperm donations between 1985 and 1987 — and another two donations in 1991 — Ms Wright believes she might have as many as 30 half-siblings.

"I would just like access to the information that is out there about me," she said.

Two-tiered system based on year of birth

In a recent wide-ranging review of WA's Human Reproductive Technology (HRT) and surrogacy laws commissioned by the State Government, Dr Allan raised serious concerns about the state's donor conception systems.

Currently donor-conceived people born after 2004 can access information about their biological parent when they turn 16, while anyone born before that year can only access data through the voluntary register.

Dr Allan's review found major issues with both systems.

Her report raised concerns about the accuracy of data being kept about people born after 2004, and the difficulties people born prior to that year faced in accessing information.

"My review revealed that the Department was not sure it could be confident that the records that currently exist are accurate," Dr Allan said.

"There are issues around the records that are currently being kept by the Department of Health in terms of the integrity of those records, and whether they are fit for purpose and ready to be released to donor-conceived people [from next year, when people born in 2004 turn 16].

"The worst-case scenario is that a donor-conceived person is told details about somebody who is meant to be their donor and that information is inaccurate, so they get the wrong information about their genetic heritage."

A spokeswoman said the Department of Health was confident it "can respond to any applications" made by people who were conceived on or after December 1, 2004, when they turned 16 next year.

Call to allow access to identifying data

Dr Allan said the voluntary register was failing people born prior to 2004.

"At present the operation of that voluntary register really doesn't serve people like Beth in terms of supporting her to access that information," she said.

Dr Allan's recommendations included:

An urgent audit of data to ensure accuracy and reliability

Changing the law to allow all people conceived using donated sperm/eggs, regardless of when they were born, access to identifying information

Notifying donor-conceived people of any half-siblings

Ms Wright urged the State Government to enact the report's recommendations.

"I really hope that the Government read it, listen to what is recommended and enact the recommendations sooner rather than later, don't just sit on it letting it gather dust," she said.

The recommended changes outlined in Dr Allan's report would bring WA in line with Victoria, where all people, regardless of when they were conceived with donor eggs or sperm, can access identifying information when they reach a certain age.

Dr Allan also recommended WA introduce a veto system like Victoria's, so that people who donated eggs or sperm prior to 2004 could request not to be contacted.

Legislation outdated: Health Minister

Health Minister Roger Cook said the State Government supported a person's right to know their genetic heritage no matter when they were conceived and would "look closely at how this can best be achieved".

"These are complex matters and it is important that we get it right," he said.

"The Government will respond once careful consideration has been given to these complex issues and how they can be best actioned."

But he said in the meantime he wanted to see what improvements could be made straight away.

"I'm keen to look at what we can do better right now: improving the use of the voluntary register, better support for donor-conceived people accessing the register, removing the requirement to force people to get counselling before accessing the register, removing restrictions on who can provide this counselling, and making it more accessible overall," he said.

"It is important to understand that [the Reproductive Technology] Council has been trying to deal with legislation that is outdated and no longer relevant to modern clinical practice or good regulatory practice.

"As such, it is not surprising that people and service providers have different views about the council.

"This shows how important it was to do this review."

Department looking at 'more comprehensive' system

A Department of Health spokeswoman said its Reproductive Technology Unit — which manages the voluntary register — did its best to support people to access information about their donor, but it was a complex process.

"It embodies deeply private and emotional experiences and is of profound significance to the people involved. Connecting people linked by donor treatment is still relatively new," she said.

"The department is looking at how a more comprehensive and integrated service can be provided."

The spokeswoman said for people who were conceived by donor before legislation was introduced in 1991, information may not be available.

"There was no legal requirement for doctors to provide that information to the Department of Health or to retain records indefinitely, as the legislation now requires," she said.

"Clinics respond to our requests for information, but sometimes that information is not available, or it takes time to retrieve archived files.

"The Department of Health has no authority in relation to donor conception treatments and records before the 1991 legislation, and relies on the cooperation of the clinics.

"Information about number of half siblings, year of birth and gender is provided — if it is available."

Share the story of your fertility journey. Email: makingbabies@abc.net.au

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Topics: states-and-territories, government-and-politics, reproduction-and-contraception, perth-6000, wa

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