Molly Nash and procreative beneficence

Molly Nash was born in 1994 with Fanconi anaemia (FA), a life-threatening genetic disorder which causes bone marrow failure, leukaemia, and typically, an early childhood death; her life expectancy did not go past the age of 10. At the time, the only proven treatment was a hematopoietic stem cell transplant, which demands a perfect human leukocyte antigen (HLA) match. Most previous attempts of this operation were fatal due to graft rejection.

Molly’s parents turned to conceiving another child through in vitro fertilization, followed by a pre-implantation diagnosis (PGD) to select an embryo that was not only free from the FA mutation, but also an HLA tissue match for Molly. Their subsequent son, Adam (a very fitting name indeed), was born healthy and deemed the world’s first ‘designer baby.’ His umbilical cord blood provided the life-saving stem cells for his dying sister’s successful transplant.

So the Lord God caused a deep sleep to fall upon the man, and while he slept took one of his ribs and closed up its place with flesh. And the rib which the Lord God had taken from the man he made into a woman and brought her to the man. Then the man said, “This at last is bone of my bones, and flesh of my flesh…” Genesis 2:21-23*

This case thrust humanity and public consciousness into a new era of procreative decision making. PGD allows for screening of embryos for genetic or chromosomal abnormalities before implantation. A polygenic risk score is generated, indicating the predictive validity of certain traits. This power to select, therefore, begs the question of whether we use these technologies to select the ‘best’ possible children.

Julian Savulescu is one of the forerunners to instigate this debate. He argues for a principle termed Procreative Beneficence (PB). He asserts that of the possible children reproducers could have, they have a moral obligation to select a child with the greatest chance of leading the best, or at least as good a life as the others, based on the relevant, available information. If genetic information suggests Embryo A is likely to experience a life of significantly greater well-being than Embryo B, PB dictates a moral obligation to select Embryo A.

I believe that we do have a strong moral reason for such selection, in lieu of Savulescu’s assertion of a strict moral obligation. An obligation imposes a standard far exceeding conventional parental duties and even the practices of the most conscientious parents. Maximizing a child’s ‘bestness’ is not only burdening, but also deeply infringes upon parental autonomy. A strong moral reason, however, upholds considering the child’s wellbeing without such an over-demanding, autonomy-negating directive.

Secondly, my refined stance on PB contends a ‘good enough’ threshold for selection, particularly concerning non-disease traits. The goal is not the relentless pursuit of the best possible child in an absolute, competitive, or narrowly defined sense, but rather to select a child who possesses a high likelihood of achieving a flourishing life. This constitutes a life that is substantially free from severe, preventable suffering and endowed with a baseline of traits and capacities conducive to well-being and a wide range of life plan. This threshold dovetails Aristotle’s view of eudaimonia (often translated as living well) as the highest human good. Here, certain external goods and internal capacities are necessary, or at least highly conducive, to the pursuit of a eudaimonic life. Selecting for good health sets foundational conditions of possibility for eudaimonia. This ‘good enough’ standard mitigates concerns about an endless pursuit of genetic perfection and acknowledges the inherent worth of diverse human lives that meet a threshold of well-being.