“Editing” the human germline – the genes passed on from generation to generation that have evolved naturally over millions of years to create each unique one of us – has gone from science fiction to science fact. We can now design our descendants.
The vast majority of bioethicists and many major institutions had agreed that would be wrong. Now, some are arguing it should be allowed because of its potential to do “good”.
How should we decide? Let’s examine the past of “assisted human reproduction technologies” for some lessons.
In 1978, the birth of Louise Brown, the first “test tube” baby conceived outside a woman’s body through IVF, shocked the world. But IVF quickly became a routine procedure.
Then freezing human embryos faced us with ethical issues regarding those “leftover” from IVF. May they be donated to an infertile couple, a single woman, a same-sex couple, used for research or as a source of stem cells to manufacture therapeutic products to benefit others? If the parents are killed, do the embryos deserve a chance at life? If they divorce, who “owns” the embryos?
Frozen sperm long preceded freezing ova. Was post-mortem use of sperm by a dead man’s parents to “replace” him with a grandchild ethically and legally acceptable? Should women freeze eggs when young to use in their 50s or even 60s to create a family?
Preimplantation genetic diagnosis meant certain groups of people, e.g. those with Down syndrome, could be eliminated. Sex selection became easy.
Canada prohibited commercialization, but the “fertility industry” exploded into a US$9.3 billion a year business worldwide in 2012, estimated to reach $21.6 billion by 2020. Sale of ova and sperm, paid surrogate motherhood, even where legally prohibited, flourished raising ethical and human rights issues, especially the exploitation of poor and vulnerable women.
The “products” of these transactions – children – reached an age when they could protest their origins, especially that anonymous sperm (and now ova) donation is wrong. They called themselves “genetic orphans” and demanded to know their biological parents and other family members. Some Canadian provinces changed their law to require such disclosure.
Making a baby with three biological parents was recently approved in the UK. Those favouring it minimize the momentousness of what that means and argue “it’s just another medical treatment to deal with genetic disease”.
So turning to the future, what ethical, legal and human rights issues might reproductive technologies face us with?
The debate about “editing” the human germline has shifted from almost universal agreement it’s inherently wrong, to asking would allowing it do more good than harm – a utilitarian approach. What if we can delete just one gene and cure a terrible disease such as Huntington’s chorea? It will be difficult to say no. And if we allow this, could we effectively prohibit “designer children” for “vanity” or human enhancement reasons?
Many people believe human cloning is unethical, but would they change their minds if they needed an organ and they could be cloned, a surrogate mother used and the unborn child aborted to obtain tissue or organs for transplant? I know of parents who wanted to create IVF embryos, genetically screen them for “best match” to their severely diabetic 7-year-old daughter and abort the “saviour sibling” at five months gestation to take its pancreas for transplant.
What about using artificial uteruses when these are developed? The image of a laundromat comes to mind – machines containing babies instead of clothes. Some celebrities able to bear a child are using surrogate mothers. They might prefer this.
And when such manufacturing becomes possible why limit the number of children for those who can afford the cost? The son of a Japanese billionaire had at least ten children by Thai surrogate mothers in 2014, why not five hundred?
What about creating artificial sperm or ova so a same-sex couple could have a genetically shared child?
Ethically we must place the future child at the centre of the decision-making.
Do human beings have a right not to be designed, not to be manufactured, not to be the object of commercial deals, to come into existence with their own unique, naturally created ticket in the great genetic lottery of the passing-on of human life?
And we must protect present and future societies.
What would be the impact on society’s most important values, especially respect for human life, shared beliefs that parents have unconditional love for their children and that human life is priceless and must never be made a commodity?
These technologies bring momentous possibilities for changing human life and its transmission and entail momentous decisions.
Margaret Somerville is the Samuel Gale Professor of Law, Professor in the Faculty of Medicine, and Founding Director of the Centre for Medicine, Ethics and Law at McGill University, Montreal.