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Medicine, Health Care and Philosophy
Published in: Medicine, Health Care and Philosophy 2/2024

Open Access 16-02-2024 | Scientific Contribution

A critical view on using “life not worth living” in the bioethics of assisted reproduction

Author: Agnes Elisabeth Kandlbinder

Published in: Medicine, Health Care and Philosophy | Issue 2/2024

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Abstract

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies.
Footnotes
1
A question that certainly arises in this context is the one of sameness and/or difference of PGD versus GGE interventions. The difference is certainly practical (as in different technologies) as well as philosophical (genetic selection versus alteration, see e.g. Ranisch 2019). However, this difference is not essential to my argument here.
Thus, the differences between PGD and GGE interventions shall not be explored in detail in this paper and the focus is laid on LNWL-based justifications/requirements thereof.
 
2
A contentious question is whether a distinctly different child would be created through an alteration via implementing GGE, so to say, whether GGE is identity-affecting or person-affecting. This also touches on the question of whether GGE can be argued to be therapeutic or not, and if embryos can be framed as patients. See more on this question in e.g. Cavaliere (2018).
 
3
On the idea of coming into existence as harm see Benatar (2007).
 
4
Sometimes the concept is also termed ‘wrongful life’ in the literature. So to not get confused with legal definitions of the concept, the term ‘life not worth living’/LNWL is used here throughout. Excluded from this discussion are legal notions of the idea manifesting in ‘wrongful life’ or ‘wrongful birth’ civil claims and resulting lawsuits in certain countries’ legislations such as the Netherlands, the UK, South Africa, or the US (see ten Have and do Céu Patrão Neves 2021).
 
5
‘LNWL’ is used as an umbrella term for both in the following, ‘and cognate concepts’ is only occasionally spelled out. Respective differences are discussed in Sect. “Discussion: The limited usefulness of LNWL”.
 
6
It is important to note that the scrutinized arguments are neither homogenous in their normative conclusions, nor can they be said to represent a canonical/standard view of the field. The presented scholars diverge in their individual arguments quite a bit at times, and while LNWL is present, it is not always the primary constituent of an oftentimes overall larger claim. What the scrutinized texts share is the implementation of LNWL as well as the property of being widely referenced works in the field.
 
7
End-of-life cases present a very different situation, e.g. an existing person themselves deciding that they no longer find their lives worth living and would prefer to be assisted to die (see e.g. Schaber 2017). My conceptual and epistemological criticism on LNWL does not necessarily extend to those cases, granted that subjectivity exists and thus a self-assessment condition along with the criterion of informed consent can be fulfilled (see Harris 2003; Peled et al. 2017).
 
8
Relevant bioethical institutions and stakeholders such as the Nuffield Council, the German Ethics Council, the UK Academy of Medical Sciences, US National Academies of Sciences and Medicine and World Academy of Sciences and the Royal Society and National Academies (the latter co-organizing the International Summits on Human Heritable Genome Editing) have an overt interest in providing public access to their work and events on ARTs as well as disseminating their recommendations to a larger audience to foster public societal debate.
 
9
An exception to this is Glover (1977, 2006) who dedicates a lot of thought and analytic exploration to the conceptual intricacies of LNWL.
 
10
On objective list theories and discussion thereof see e.g. Finnis (1980), Parfit (1976, 1984), and Fletcher (2013); see also the influential capabilities-approach developed by Nussbaum (1999, 2006, 2011).
 
11
Informed preference is commonly viewed as a special subgroup of desire fulfillment theories. In the case of beginning-of-life, this informed preference is constituted by assuming the prospective person in question would prefer what is rationally best for them (see e.g. Sobel 1994). On rational desire and LNWL see also Glover (1977).
 
12
A much debated, extreme version of the worse-than-nonexistence view is defended by Benatar (2007). Other common comparisons refer to e.g. most people’s lives (e.g. Buchanan et al. 2000, p.224).
 
13
On the difference between those conceptions and the differing corresponding thresholds see Ranisch (2021, pp.248–255).
 
14
On the shared properties of these subjectivist approaches see Heathwood (2006).
 
15
See e.g. on missing awareness for researcher positionality in qualitative research Oakley (1981); Anandhi and Velayudhan (2010); Griffin (2012); on intersectional critiques of feminist epistemology see Collins (1990), hooks (2015), Kendall (2020). On the moral problems of “you say you’re happy, but…” arguments regarding the lives of disabled people see Goering (2008) as well as Marsh (2019). On the discursive exclusion of people with disabilities see also e.g. Charlton (2000); Kafer (2013); Taylor (2018); Piepzna-Samarasinha (2018).
 
16
Ableism, adjective ableist, according to disability justice advocate Alice Wong, refers to “a form of oppression that systematically devalues disabled people who are considered non-normative in the way they look, behave, move, think, or their way of being in the world” (Wong 2017).
 
17
The alternative social model has thus, in contrast to the medical model, proposed the distinction between disability (located outside the body as environmental barriers) and impairment (as located inside the body, e.g. pain, physiological symptoms). Contemporarily, this model is increasingly challenged for being too binary and simplistic; yet it is still used regularly for its advantages of structural clarity, see e.g. Shakespeare (2013).
It is important to acknowledge that some authors do indeed make an effort to factor in environmental and social aspects into LNWL judgments, e.g. Wilkinson (2010) and Archard (2004).
 
18
Empirical research also points to differing judgments of respective levels of life quality of people with disabilities compared to people without disabilities, see Albrecht and Devlieger (1999); Rand and Caiels (2015).
 
19
One could hypothesize that this kind of clear-cut judgment might be appropriate for cases where the life contains a total of zero benefits compared to harms, hence lives of pure harm. Yet, such cases are largely philosopher’s abstractions, with a low likelihood of matching any corresponding real-life cases.
 
20
In addition, how much pain, how frequent, how short the life expectancy etc. is not specified.
 
21
So, when exactly we would have decisive moral reasons to not reproduce or to create a different child than we would otherwise have had.
 
22
This is also the case regarding far future people, taking for instance the normative significance of anticipated effects of climate change on future generations. The author thanks an anonymous reviewer for this consequential extension of the presented argument.
 
23
Naturally, such interpretations can be false. Hence, they also come with a degree of unreliability, especially when verbal communication is absent. This unreliability equally exists regarding subjects who do communicate verbally, since it is possible to lie about subjective well-being. However, I would argue that interpreting verbal as well as non-verbal communication according to social and cultural codes is not quite as unreliable as anticipating a yet non-existent subject’s mental states.
 
24
On prevailing anti-disability bias see e.g. Albrecht and Devlieger (1999); Wilson and Scior (2014); Kaposy (2019).
 
25
Abstract narratives in the sense that the quoted passages, while including narrative elements and devices, rarely represent a fully-fledged plot. A few examples of narrative devices in clear case presentations are e.g. Purdy (1996), quoting a gripping entry statement from The Merck Manual (1972, pp.1363, 1346) “Onset is insidious”, or the strategic parallelism “walking becomes impossible, swallowing difficult, and dementia profound”.
 
26
Although some authors make an effort to also cite people who live with or are in close contact with the flagship conditions they use, it is not very common in most of the LNWL literature. For example, Purdy (1996, p.44) gives a brief citation of a person with a congenital condition, yet only to present them as a defender of a polarized optimistic position in the debate that is almost caricatured as naive. This kind of citation practice does not seem to further an inclusive and differentiated debate, either.
 
27
This means quoting and involving in normative research designs all sorts of people, including affected persons, caregivers, disability rights and justice advocates, and so on. Further steps could include translating bioethical texts into plain language to publish alongside original academic articles, and to ensure audio captions or sign language translations are provided at relevant public events for accessibility of the debate.
 
28
For more on epistemic humility regarding GGE applications see Garland-Thomson (2020).
 
30
For instance, the National Academies of Sciences, Engineering, and Medicine that hosts the International Summits on Human Gene Editing did not plan on providing audio captions for the public online stream of the event until Teresa Blankmeyer Burke, Professor of philosophy at Gallaudet University and advocate of the deaf community, actively pointed it out to a member of the organizing committee (see Blankmeyer Burke 2022, 39:17 min).
 
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Metadata
Title
A critical view on using “life not worth living” in the bioethics of assisted reproduction
Author
Agnes Elisabeth Kandlbinder
Publication date
16-02-2024
Publisher
Springer Netherlands
Published in
Medicine, Health Care and Philosophy / Issue 2/2024
Print ISSN: 1386-7423
Electronic ISSN: 1572-8633
DOI
https://doi.org/10.1007/s11019-023-10191-7

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