An interactive audio station exploring ethical issues in genetics

Imagine if in choosing your child’s first name you could have a say in something that might improve their prospects in life. Would you do it? There is good evidence that such factors can have a measurable impact: a name can influence whether someone is invited to a job interview, while physical appearance can also affect later professional and financial success. For most people, choosing a name is a completely natural part of the decisions surrounding the birth of a child. But what if it were not about the name, but about eye colour? A predisposition to a disease? Intelligence?
Such questions often prompt a moral intuition, quickly and almost instinctively – sometimes as a clear “yes” or “no”, though often as a weighing up of the alternatives. But what grounds this intuition, and what would follow from it, for individuals and for society? The subject involves a medical and ethical complexity that only becomes apparent upon closer examination. Let’s Talk does not seek to convince or instruct you about what is right. Rather, it invites you to reflect and enter into dialogue.

The human genome was first sequenced in the early 2000s. Since then, it has become possible to detect genetic changes, better understand them and correct them in a targeted way. Even at the beginning of a pregnancy, a simple blood test can indicate how high the risk of a chromosomal abnormality is for the unborn child. In the case of in vitro fertilisation, embryos can, under strict conditions, be tested for certain genetic diseases before being implanted. And gene therapy now offers the possibility to treat the root causes of some genetic diseases. However, whether genetic changes may already be made in embryos remains highly controversial. This involves an intervention in the germline – that is, in the egg or sperm cells. Such a genetic change would be passed on to all offspring; the safety and ethical implications of such an intervention are currently the subject of intense debate.

Genetic information can help to better assess the risk of disease, particularly in the unborn child, but also in adults. For example, polygenic risk scores (PRS) can take into account many genetic variants and provide a statistical assessment of the genetic predisposition to certain diseases – such as a heart attack or certain types of cancer. However, they do not provide a definitive prediction, as other genetic, biological, environmental and lifestyle-related factors also influence the actual risk of disease. Such an assessment can nevertheless help to identify elevated risks at an early stage and, where appropriate, take preventive measures.

The more that can be identified and determined genetically, the more pressing the question becomes of whether what could be done should also be done, and whether – should research ever reach that point – parents might or should be allowed to choose between potential children. The positions of several moral philosophers, presented below, address this question.

Julian Savulescu advocates a particularly far-reaching position. Even within the limited choice currently possible between embryos, he formulates a clear principle: parents who can choose between potential children should choose the one that is expected to have the best life. He calls this principle “procreative beneficence”. At first glance, this sounds plausible – who would not want the best for their child? But if the desire became an obligation to choose the “best” child, reproduction would become an exercise in optimisation. Robert Sparrow makes the objection that every society has characteristics that promise better opportunities. Applied consistently, this could ultimately leave only one “morally correct” choice, obliging parents to perpetuate social preferences and prejudices.
More sceptical voices take a different view. If everything becomes a matter of choice, Michael Sandel argues, something is lost, namely the willingness to accept a child as they are. Jürgen Habermas asks whether a person can still freely determine who they are if others have predetermined their nature.

Allen Buchanan and his colleagues argue that a blanket ban is too simplistic, as there are many gradations between treating a serious illness and selecting desirable traits. They see the greatest danger not so much in the technology itself as in the unequal distribution of its benefits, which could further deepen existing inequalities, including on a global scale.

Finally, two voices speak from the perspective of living with disability. Adrienne Asch, who is herself blind, points out that deliberately selecting against a disability sends – whether intended or not – the message that such a life is worth less; moreover, it reduces an entire person to a single characteristic. Eva Feder Kittay, a philosopher and mother of a daughter with a severe disability, takes a different approach. In her view, what makes a person a person and determines their value as a person is not their abilities, but their relationships – everyone is, as Kittay puts it, “some mother’s child”. In this way, she gets to the heart of the debate about selection: even the question of which child would have the “best” life presupposes that the significance of a life can be determined in advance by its characteristics. This is precisely what she rejects.

Anyone who speaks of selecting “better” human beings inevitably encounters the concept of eugenics. In the museum’s permanent exhibition, one section also traces the history of the Nazi era, during which people were persecuted and murdered in the name of so-called “hereditary health”. The discussions above differ fundamentally from the crimes of the Nazi era – they concern individual decisions rather than state coercion. Yet they raise related questions: about the criteria for a “good” life, and about the relationship between personal freedom and societal pressure to conform. These are open questions that concern us all. You can answer them silently, for yourself, here. But at the display cases in this room, you can use a QR code to enter into an interactive dialogue that takes you deeper into the subject. The aim is not to change your mind, but to help you see more clearly what your views are based on and what questions the subject raises.

Text by Radin Dardashti and Sarah Kim-Hellmuth
Radin Dardashti is a philosopher of science and Sarah Kim-Hellmuth is a human geneticist.
In collaboration with philosopher Tabea Gandelheidt.