Etienne and Janelle (not their real names) were together for several years and chose to try to start a family.
Months later Janelle was overjoyed with a successful pregnancy test, quickly calling Etienne to share the news.
However, their joy turned to fear and stress after they were told their child would be born with extremely severe and life-ending birth defects.
The couple chose to take the baby (a girl) to the full term of Janelle’s pregnancy. She was born. A few precious, sad hours later, she died.
What if the child could have been treated and saved while in the womb? What if the specific issues that spelt disaster could have been identified and corrected at the point of foetus?
At the time, such things were a fantasy, but gene editing and the perfection of gene therapies promise to bring about dreamlike miracles.
Or the stuff of nightmares.
For the lay person, the progress in scientific understanding of genetic code can be confronting. Terrifying even. Our ability to alter cellular structure goes beyond the already challenging progression of scientific capacity that has seen thousands of IVF children born.
Professor Martin Delatycki, clinical director of the Victorian Clinical Genetics Services, says gene editing is “where you literally edit the chemical structure of a gene, so that a faulty gene becomes a healthy gene”.
The possibility of life being designed to order is particularly alarming to many people who live with, or care for, people whose everyday reality is perceived as being different to the “norm” – physically or mentally.
Synod disability officer Andy Calder says talk of genetic engineering invariably creates anxiety for people with disabilities.
“So often, the discourse implies language of deficit or deviance that has to be ‘fixed’,” he says.
“This is surely antithetical to the gospel message of ‘perfection’, which is about the faithfulness of God’s love, regardless of who we are.”
With the gaining of human beings’ capacity to select, sustain, or refrain from cultivating life comes new ethical questions. These join perennial conversations around “playing God” issues of abortion and euthanasia.
Peter and Anne Brown faced an ethical decision during their second pregnancy. At the 12-week scan they were told the foetus was in the “high risk” category of being born with Down Syndrome.
They were given four weeks to decide if they wanted to terminate the pregnancy, but Peter says it didn’t take them long to decide to press ahead.
“We were both from really religious backgrounds and both had tremendous belief in the sanctity of life,” Peter says.
“Sadly, the day after we received the news about our unborn child, my wife’s brother took his life. That really brought home how insignificant our challenge might be.
“We did worry though what impact a Down Syndrome child would have on our family. We had an eight-month-old child at the time.
“I have always been a really good sleeper but I don’t think I slept fully through a night until our daughter was born – and she didn’t have Down Syndrome.”
Last year the Wall Street Journal reported that since 2015 researchers in China had genetically engineered the cells of 86 patients who had cancer or HIV. Of that number, at least 15 deaths resulted – seven of which occurred in one trial.
One doctor reportedly performed “Crispr-Cas9” gene editing to increase resistance to HIV infection. Dr He Jiankui announced he’d edited the genes of twin girls to prevent them contracting HIV from their father.
There was no independent confirmation of the data and results, no publishing in a reputable journal, and no idea what may result in terms of unexpected consequences.
Martin Delatycki says such Crispr-Cas9 research and procedures are akin to human experimentation.
As such they could be considered a violation of the edict given by the Greek father of medicine, Hippocrates, to his students to “first, do no harm.”
“Dr He’s work has caused enormous concerns,” Martin says.
“We believe that it might try to fix one problem and cause others in the process. If it’s true, if it has occurred, then you will be able to follow the process of a child being born, and then see the genetic target and the possibility of ‘off-target’ impacts.
“They might introduce a lethal condition to the child itself – if you introduce a change in an unintended gene and cause a lethal disorder in that process, then that is clearly, ethically, disastrous.’
There are also ethical issues around the notion of “designer babies”.
“These are major questions for society,” Martin says.
“Designer babies and genetic manipulation and augmentation will be possible in the future, to a certain extent, but the bigger issues will be around the quality of life and the nature of the pursuit of a ‘perfect child’.
“We will have to think very carefully when we get to that point in time. Who do we include and exclude from the gene pool?”
Martin’s question has historic echoes, remembering the crimes, errors and tragedies of the 20th century in areas such as eugenics, and the compulsory sterilisation of minorities, prisoners, the poor and the disabled in some countries.
University of Adelaide bioethicist Professor Rachel Ankeny says gene editing and other technologies will not “‘cure” everything or create “perfect” people.
“The science fiction fears of a homogeneous society with no variation is not likely to result from these types of applications,” she says.
“More importantly, we must make certain that we do not place lower value on certain types of lives or fail to provide support for those in our society who need it.”
When asked about people’s decisions to test in pregnancies for Down Syndrome and whether this leads to genetic selection, Rachel says: “Part of this is about how we shape our values as a society and how we support those of us who have health needs. “
“Down Syndrome is not just about developmental delays, there are also very real health needs, such as heart defects.”
Rachel says decisions to terminate pregnancies when Down Syndrome is detected occur in the context of lack of support mechanisms, lack of visibility and positive representation of DS.
“Worldwide, the rate of Down Syndrome births is continuing to go down, because people are choosing to have terminations,” she said.
“At the end of the day it is families who don’t feel they can care for a child with these sorts of problems (that decide to terminate the pregnancy).”
“On the other hand, if you know you are going to be having a child with these sorts of issues, it’s not a bad thing to know that in advance, to prepare yourself, get some counselling and get them on a list for early intervention and so on.”
Rev Claire Dawe, chair of the Uniting Church of Australia’s Synod Ethics Committee, says gene editing has not been addressed by the group.
“We have to be very careful with genetic codes, and the exploration of editing those codes,” she says.
“For example, disease or disability does not necessarily mean that people in those situations are without hope; we simply cannot say that.”