Seeds of doubt

Professor Isabel Karpin by Joanne Saad

Professor Isabel Karpin by Joanne Saad

In summary: 
  • Research in the Law faculty about IVF legislation and the impact it has on the rights of individuals and families trying to conceive
  • Unwittingly, legislation is disadvantaging same-sex couples trying for genetically related siblings

For most couples, conception, birth and their parental rights are straightforward concepts protected by the law. For others, the necessity of using assisted reproductive technology (ART) can leave them in a legal grey area where the family they desire is out of reach.

Professor in the Faculty of Law Isabel Karpin is one of the lead researchers on an Australian Research Council funded project that aims to clarify where couples stand.

“The basis of the project was a concern that there were many people using in vitro fertilisation (IVF) who wanted more choice about how embryos and gametes were made available,” says Karpin.

“We wanted to know if the way in which the law is being framed may in fact be inhibiting access and limiting opportunities for positive reproductive outcomes.”

The project team has been conducting surveys and interviews with IVF patients to find out what choices are available to them on their IVF journeys versus what choices they would like to make.

Currently, ART in all states and territories is bound by a series of guidelines developed by the National Health and Medical Research Council (NHMRC). In some areas, state governments have developed their own additional laws.

“One of the things that’s actually quite troubling for us is the fact that there’s some ambiguity in some of the legislation and in most jurisdictions there’s no one place patients or clinic staff can go to in order to find out what their rights are under the law,” says Karpin.

In some cases, the laws are discriminatory or excessively restrictive. For example, in most states and territories, donated gametes can be distributed to between five and 10 families. This rule is in place to minimise the risk that children of the same sperm donor will unwittingly meet and form relationships later in life. In NSW, however, gamete donations are limited to distribution to five women.

“The effect is arguably discriminatory against women in same-sex relationships,” says Karpin.

“We’ve had same-sex families where one woman in the partnership has had a child, and then the other woman in the partnership wants to have the next child using gametes from the same sperm donor to create genetically related siblings.

“However, because donated sperm is so scarce, it’s often the case that it has also been donated to other people and the five-woman limit has already been exceeded. This would be less of a problem if the limit was applied to families rather than women.”

Karpin says, the donation of embryos complicates things further. According to the UTS research and the outcomes of similar research projects conducted in Australia, many couples feel uncertain about their rights and about what they should do with leftover embryos once their IVF treatment comes to an end. Their options are to dispose of them, donate them to medical research, or donate them to another couple.

Embryo disposal is largely unlegislated, with Victoria being the only state to have clear rules on how the disposition, done by the clinic, should take place. All other states and territories are bound only by the NHMRC guidelines stating that disposal must be respectful and with the consent of both parties who created the embryo.

The option to donate the embryos to medical research is equally tenuous. Many couples opt out because the type of research they are donating to is not made explicit.

“You know, they worry about controversial or unethical practices being carried out on something they consider to be part of them. Many patients would like to specify that the embryo can only be used for specific kinds of research, so there are some things there that the law could possibly facilitate and clarify,” Karpin says.

Perhaps surprisingly, donation to another couple is the least popular of the three options. “A lot of research that has already been published, not just our own, has shown women and men are reluctant to donate for reproductive purposes.

“They start off quite keen, but once they go through the process and have children from the embryos they’ve got in storage, many people tend to see those remaining embryos in storage as potential siblings, or potential children, and so they change their mind.”

Those who do donate, and those who receive the donated materials, often come face-to-face with additional issues.

“What’s interesting about this is that in NSW, if you donate the gamete, you lose the capacity to withdraw your consent once the embryo’s been made. But if you donate an embryo, you can withdraw your consent as a gamete provider to that embryo before the embryo is transferred to the recipient.”

“Let’s say you donate five embryos, and somebody uses one of them to have a child, and then you think, ‘Actually, I do want to have another child of my own’. You can withdraw the consent for the recipient to use the remainder of those embryos, thereby limiting their ability to have genetically related siblings.

“So there’s a question mark about whether that’s an appropriate right to be able to withdraw, and we’re getting a mixed response about that.”

The outcomes of the research project will be used to determine whether or not existing laws are unnecessarily restrictive. The team will also seek to make a series of recommendations as to how the laws can become more accessible, transparent and inclusive. 

“There are some obvious questions there about whether restrictive laws and policies are limiting the pool of available donated gametes or embryos for reasons that are not very clear,” says Karpin.

“What we hope to do as a result of the project is to come up with a series of recommendations, at least at the NSW level, for the way in which the laws need to change.”

Credits: 
Photographer: Joanne Saad