Techniques like gene editing may bring more equality, but can just as easily bring less. Now is the time to make up our minds about the future because we can’t leave this up to a handful of experts who advise the government.
Most of you will have heard about the recent CRISPR-Cas9 breakthrough. On 26 July, scientists in Oregon successfully used the technique to replace a defective piece of DNA with a regular piece of DNA. It concerned a gene with faulty DNA that normally results in heart disease.
This was only one small step, involving fertilized egg cells that were allowed to develop for no more than a few days and weren’t implanted in a womb.
But when techniques like CRISPR become routine, which “defects” are we going to edit out and which ones will we leave intact? And will this be the domain of commercial enterprises who sell their services or should this be part of everyone’s health care?
At the moment, we have the practice that fetuses are tested for certain conditions. To give you an idea of what this means in practice, in 2009, the abortion rate for fetuses diagnosed with Down’s syndrome in the UK was 92%.
Also, embryos created with IVF are subjected to PGD (pre-implantation genetic diagnosis), which has been around for decades. The use of IVF is rising.
Right now, the UK’s Human Fertilisation and Embryology Act 2008 states that “Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop: (a) a serious physical or mental disability, (b) a serious illness, or (c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.”
Who decides what a serious physical or mental disability, a serious illness, or any other serious medical condition is? In practice, that’s the UK Human Fertilisation & Embryology Authority. Currently, embryos with one of 400 conditions such as a genetic form of dwarfism called achondraplasia or Down’s syndrome are never used in IVF in Britain. Deselection of embryos with other conditions is awaiting approval.
Will the same eventually happen when techniques like CRISPR go mainstream?
This may all sound far off right now, but within the next few decades, human procreation is bound to change drastically. It is likely that we will eventually stop using sex to create babies. Instead, we will make all our babies “in the lab” and let the embryo develop in an artificial womb.
There is nothing wrong with that. We’ll get used to it, just like we got used to cars, trains and planes or the fact that women can attend universities now whereas they weren’t allowed to in the not too distant past.
But it will also mean that we’ll be able to do a lot more genetic tweaking. We need to start thinking about these upcoming changes now. What kind of society do we want to see develop? Do we want people to resemble each other more and behave in similar ways?
There are several reasons for not eagerly fixing too many “defects” that lead to viable human beings who live worthwhile lives, other than that groups of people are starting to demand the right not to be “edited out”.
- The first is that there are currently several ongoing trends of emancipation. This includes the emancipation of persons with a wide range of conditions who we used to lock up and keep out of society. Deaf people and blind people, people with learning disabilities and so on. This emancipation is leading to accomplishments that we didn’t consider possible only a very short while ago. Particularly people with Down’s syndrome currently keep astonishing us all. Many have jobs now, and some serve as city councillor, become artists or are getting academic degrees.
- A second reason is that we don’t know whether we may have a particular need for persons with various conditions such as autism spectrum disorder in the future. It is unlikely that we will continue to communicate the way we do now. Maybe we’ll end up communicating solely via images. We may well discover that those of us who now seem best suited for keeping up in society will fall behind then because they lack certain talents. We need the greatest neurodiversity possible.
- A third reason is that lots of so-called impairments are nothing more but hindrances created by society. Better education and continued emancipation will see many of these hurdles disappear.
- A fourth reason is that technological progress itself will come up with a wide range of solutions to accommodate everyone. Once more humans start integrating technology into their bodies – we are already seeing some of that – there soon won’t be any remaining limitations for those currently still considered impaired.
For more on the topic, see also this article in Nature, by David Cyranoski:
China’s embrace of embryo selection raises thorny questions (16 August 2017).