"That's eugenics, isn't it?"
Kim Hill is joined by bioethicist Josephine Johnston from The Hastings Centre (the world’s oldest bioethics research institute), and a panel of experts including Mary Birdsall, Māui Hudson, and Andrew Shelling to explore the use of gene editing technologies for human fertility and reproduction.
Mary Birdsall: “There is some funding available in New Zealand for pre-implantation genetic diagnosis. You have to have a serious inheritable genetic condition that has a 25% or greater chance of your offspring getting it to quality for publicly-funding PGD. The diseases that come through for testing are the Huntingdon’s, the cystic fibrosis, the really terrible diseases.”
Kim Hill: “So when you’re doing the pre-implantation diagnosis, you’re just testing for one disease?”
Mary Birdsall: “Yes, but at the same time because the technology exists we usually also screen the embryos to make sure they have the right number of chromosomes because many people might want a child that didn’t have Huntingdon’s but possibly also didn’t have Down Syndrome.”
Kim Hill: “What do you say to people who say that even that minimal level of screening will no doubt increase over time, because of the ability we have now to gene-edit. That ensures a society that is prejudiced and discriminating?"
Mary Birdsall: “The public funding is available for severe disorders so I don’t think we’re practising eugenics in New Zealand. I think what we’re doing is reducing the disease burden on society. A child born with cystic fibrosis costs around $500,000 in health care costs across the average lifetime, which is about 37. And that’s not including the possibility of heart and lung transplants. I think that there is an economic argument that society could bring to offer pre-implantation genetic diagnosis for certain conditions.”
Josephine Johnston: “That’s what eugenics is. Trying to improve the genetic stock for the benefit of everybody.”
Kim: “The other thing about eugenics is that it wasn’t voluntary.”
Josephine Johnston: “The way that eugenics has been used by governments in the past has been pretty awful: in World War II and in the United States. It was imposed on people. Now sometimes people talk about whether or not we’re moving to a world in which we have voluntary eugenics. We choose to sign up for it. And I think that’s what’s already happening a little bit.”
Kim Hill: “One of the discoverers of the structure of DNA James Watson is on the record as saying it should be up to the mother-to-be to abort a foetus that showed up on pre-natal testing a tendency to homosexuality. Now, the ‘good news’ is – we might be able to find the gene for homosexuality and we could just CRISPR it out. How would that be? That’s eugenics, isn’t it? That you decide the type of people you want.”
Josephine Johnston: “If you’re a culture or society that doesn’t support the families of people with disabilities or genetic conditions, people don’t need a law to tell them that they have to go and have the testing. They get that message. They’re choosing freely something that they feel a lot of pressure to do. I do think we’re getting a bit more tolerant about disability at the same time as we’re gaining all these powers to – “
Kim Hill: “– get rid of it.”
Māui Hudson: “Those sorts of conversations quickly polarise the situation and don’t let you start thinking through the nuances of what you actually have to deal with. Probably all of us here in this room are going to have our genome sequenced as part of our medical record in the next 15 or 20 years. That information is going to be available. And as soon as you have information available you have to make decisions about how it’s used.”
Chaired by Kim Hill, this programme was recorded at the Auckland Museum by RNZ in association with the Royal Society Te Apārangi.