By Lisa Dive & Ainsley J Newson.
It seems that one of the best ways a bioethics academic can attract an avalanche of very strong opinions is to publish a paper with the word “eugenics” in the title. Why then would we do so? In short, because we consider it important to pay attention to whether and (if so) how contemporary genetics differs in ethically significant ways from the widely condemned eugenics programs of the twentieth century.
We are bioethics researchers who are currently working within a large trial of reproductive genetic carrier screening (RCS) – a genomic test that can provide information about the likelihood that a couple has an increased chance of having a baby with certain genetic conditions. If the trial is successful, it could lead to one of the first government-funded RCS programs globally. This move has been welcomed by the genetics community as well as family and consumer groups, following decades of advocacy for such a program.
Despite widespread support, when the program was first announced by Australia’s health minister in 2018, it attracted accusations – from philosophers, theologians, historians, journalists – that this was akin to eugenics on a massive scale. The spectre of eugenics has influenced many tenets of modern clinical genetics practice, but it is rare to tackle the issue head-on like this. So, in our paper we decided to do just that: to take the eugenics critique of RCS seriously. We consider it important for a government funded program that has the capacity to affect which future children will be born to engage with this criticism. Indeed, doing so can help shine a light on exactly how RCS differs from eugenics, and this understanding can help to inform how RCS can be implemented in an ethically defensible way.
Our view is that contemporary genetic screening programs do not commit the ethical wrongs of historical eugenics programs. They differ in important ways: they are not coercive as individuals may choose if they have screening, they emphasise provision of information to inform reproductive choices, and are focused on avoiding suffering associated with severe illness, rather than promoting a narrow ideal of what makes a desirable person.
However, we also consider it essential that the design and implementation of RCS programs pays attention to their potential capacity to shift societal norms and attitudes that provide the context in which reproductive decisions are made. When a couple or family make a choice about a reproductive intervention, that choice is shaped by their own values and preferences. Those values, however, are influenced by the social context in which they are formed: this can include norms that place a higher value on certain kinds of people and families, and promote particular ideals about how to be a good or responsible parent. By being aware that RCS programs might have an influence on such social norms, those implementing such programs can ensure that it supports people to make the decisions that really are best for them and their family.
So we are not eugenicists, and government-funded reproductive carrier screening is not, in our view, eugenic. That does not mean, however, that we should not take the eugenics critique seriously – we should. Doing so provides space to acknowledge that carrier screening – particularly on a large scale, and for many conditions – might, over time, affect the societal norms that provide the context in which individual reproductive decisions are made. By attending to these potential impacts, we can ensure that carrier screening really does foster reproductive choices.
Authors: Lisa Dive, Ainsley J Newson
Affiliations: Sydney Health Ethics, The University of Sydney
Competing interests: None to declare