Championing the world-first Right to Know law

Knowing who you are is considered a fundamental right, but when the answer to ‘Who am I?’ lies in the complex emotional and legal matrix of donor conception, it can become as fraught a journey as, for others, it is joyful.

Since March 2017, under world-first Right to Know legislation, donor-conceived people in Victoria have had the legal right to discover the name and birthdate of their donor. Donors can also discover identifying information such as contact details of their offspring, if donor-conceived adults or parents of young offspring consent. Parents can also apply for and receive identifying information about the donor with consent.

Overseeing this extraordinary confluence of personal and family identity is Monash alumna and Victorian Assisted Reproductive Treatment Authority (VARTA) CEO Louise Johnson. She’s witnessed first-hand the impact the legislation is having on people seeking information about donors, or the children they helped to create.

While not without its critics, the legislation has opened a doorway to those within the donor-conceived community yearning to learn about their genetic links, including the medical history they entail.

Read more: Victoria’s world-first change to share sperm or egg donors’ names with children

In the first two years of the Right to Know law being in effect, VARTA, which manages donor conception registers, received 163 applications from donor-conceived people, seven from their parents, and 37 from donors, hoping to find out more about a genetic relative of whom they knew nothing.

And, says Johnson, in the “vast majority” of cases, donors are prepared to share information. 

“At the heart of all this is a natural curiosity about your heritage, about what makes you who you are from all perspectives,” she says. 

Johnson says it’s been the donor-conceived people who drove the push for Right to Know.

One strong voice belonged to Narelle Grech, whose advocates told her story to the Victorian Parliament. Grech was diagnosed in her 30s with bowel cancer, which led to medical inquiries about her family history of the disease.

Today, thanks to the Right to Know legislation, people like Narelle Grech born before 1998 are now finding their donor – and medical histories

“That was incredibly upsetting for her, as she had no way of finding out about her donor and his medical history,” says Johnson.

Grech was conceived before Victoria established its central register in 1988 as a hub for donor-conceived people, their families and donors seeking connection, and prior to 1998, when the option to donate anonymously was removed. Without intervention from the Victorian government, she wouldn’t have been able to meet her donor in the weeks before her death in 2013.

Today, thanks to the Right to Know legislation, people like Grech born before 1998 are now finding their donor – and medical histories – through the Victorian registers.

Meanwhile, increased ancestry DNA testing is also revealing some genetic surprises. “Our counsellors support people as they figure out what to do with DNA test results that reveal their donor,” Johnson says. “There really is no anonymity anymore.”

Road to VARTA

Cases such as Grech’s highlight the complexity at the heart of assisted reproductive treatment, which has absorbed and challenged Johnson since she joined VARTA in 2005.

It’s thrown her into the national and international spotlight as the go-to spokesperson for Victoria’s unique legislation that has championed the rights of those within the donor-conceived community. 

It’s part of a job description that Johnson, who graduated from Monash in 1976 with a Bachelor of Science degree, couldn’t have imagined. “I did an honours year in microbiology at the Monash medical school, which led to four years working as a hospital microbiologist,” she says.

But a desire to work with people called her out of the lab and into the classroom and, after completing a Diploma in Education, Johnson spent seven years teaching scienceand maths, mostly at Whittlesea Secondary College. Her move to public education took Johnson into the not-for-profit world when, in 1987, she was engaged by Cancer Council Victoria to set up the first SunSmart schools’ program. Quitline for the Quit Campaign followed. Both programs are still in place.

“My current work with VARTA combines science, ethics, medicine and the law, and soon after joining VARTA, I did a master’s in regulatory studies through Monash,” she says. “And it’s all been invaluable, because I use everything I’ve ever learned in this job.”

Johnson’s interest in public education continues through her dissemination of evidence-based information to the public. “Assisted reproduction is demanding financially and emotionally, and providing public education to inform and empower those who are thinking of using it, or who have used it, is an important part of VARTA’s role,” she says.