Hostname: page-component-745bb68f8f-l4dxg Total loading time: 0 Render date: 2025-02-11T01:42:42.378Z Has data issue: false hasContentIssue false
  • English
  • Français

Why we Must Change the Bioethical Terminology around So-Called “Lives Not Worth Living,” and “Worthwhile” and “Unworthwhile” Lives

Published online by Cambridge University Press:  10 February 2025

Rebecca Bennett Open the ORCID record for Rebecca Bennett [Opens in a new window]
Rebecca Bennett*
Affiliation:
Professor of Bioethics, Centre for Social Ethics and Policy, Department of Law, University of Manchester, Manchester, UK
*
Email: [email protected]
Rights & Permissions [Opens in a new window]

Abstract

The terminology of “lives not worth living,” “worthwhile lives,” and “unworthwhile lives,” used by John Harris and many others, has become an accepted linguistic convention in bioethical discussions. These terms are used to distinguish lives of overwhelming negative experience from lives that are or are expected to be of overall positive value. As such, this terminology seems helpful in discussions around resource allocation, end-of-life decision making and questions of when it might be acceptable (and unacceptable) to reproduce. This paper argues that there is, however, a problematic ambiguity inherent in these general terms that is particularly evident when it comes to discussing reproductive choices. It is suggested that in this context, this ambiguity can conceal authoritarian eugenic motivations that are difficult to justify and that many using these terms would not adhere to. As a result, it is argued that we should replace these terms with the terms “intrinsically valuable” and “intrinsically harmful.” This would make it more explicit what exactly is meant and would allow these matters to be debated with greater clarity.

Keywords

eugenicsintrinsically valuableintrinsically harmfullives not worth livingunworthwhile livesworthwhile lives
Type
Research Article
Information
Cambridge Quarterly of Healthcare Ethics , First View , pp. 1 - 11
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2025. Published by Cambridge University Press

Introduction

John Harris’ The Value of Life, as the title implies, focuses on the various ways that we value our own lives and the lives of others. In this book and his other work, Harris explores when lives might be considered “not worth living”Footnote 1 and when they might be considered “worth living” or “worthwhile”.Footnote 2 This linguistic shorthand was used by Harris and many othersFootnote 3 to refer to lives that are or are expected to be of overwhelming negative experience and distinguish these from other lives that are or are expected to be of overall positive value. As such, these terms seem helpful in discussions of central bioethical questions around resource allocation, end-of-life decision making, and questions of when it might be acceptable (and unacceptable) to reproduce, and they continue to be a widely accepted convention in bioethical discourseFootnote 4. However, in this paper, I argue that the ambiguity that is inherent in these general terms is problematic, particularly when it comes to discussions of reproductive choices. In this context, this ambiguity can conceal difficult-to-justify authoritarian eugenic motivations that others using these terms would not adhere to. As a result, I suggest that we replace these terms with the terms “intrinsically valuable” and “intrinsically harmful” in order to clarify what is meant by different authors and allow these arguments to be debated without concealment.

What do we mean by “life not worth living”?

Although this is not always explicitly stated, the terms “life not worth living” and “worthwhile life” can be used in two main ways. Harris indicates these two uses of this terminology when it comes to the ethics of resource allocation, saying:

We have frequently noted the extreme difficulty involved in discounting the value of someone’s life where we and they disagree about whether or not it is worth living, and we have also noted the injustice of preferring our assessment to theirs when so much is at stake for them. In view of all this it would be hard to prefer our judgment to theirs here.Footnote 5

As Harris explains here, one way we can use this terminology is to indicate the assessment of an individual of the quality of value of their own life, or in the case of reproductive choices, the expected self-assessment of the value of this life by this future individual. This use of these terms expresses what I call the intrinsic value of a life. Alternatively, as Harris points out, we can use this terminology to denote our own external assessment of the value of someone else’s life or a future possible life. Understanding these different possible interpretations of this terminology is important if we are to achieve the clarity of argument that these complex ethical issues deserve.

Intrinsic value

As Harris indicates, justifying preferring our own external judgment of someone else’s life over their own account of the value of their life “would be hard”Footnote 6 and in line with this, he argues that the question of whether a life is worthwhile or not “can surely only be answered subjectively.”Footnote 7 It seems clear to many of us that what matters most when making decisions about who we should prioritize for treatment, whether we should act to end an individual’s life, or whether we should avoid making particular reproductive choices is the welfare or expected welfare of the individual who is or will be at the heart of these decisions. While we will have our own views about the value or expected welfare of these individuals, if what we care about is the best interests of other human beings, then our assessment must be secondary to the experience and testimony of the individual whose life we are considering. Thus, when many bioethicists, including myself, use the term “life not worth living,” we are referring to a human life that is one that is or is expected to be of negative value overall to the individual experiencing this life. On this view, a life that is ‘not worth living’ would be one that, because of the overwhelming negative aspects of this life, it is or is likely to be considered harmful to the individual who experiences this life. Jonathan Glover explains this notion of being harmed by existing, saying that “if it does make sense to say that someone has been harmed by being brought into existence, this can be true only in cases where the person has reason to regret being alive, where life is so bad as to be ‘not worth living’.”Footnote 8

Intrinsically harmful lives?

It is important here to clarify what we mean when we argue that what might be termed a “life not worth living” is or is expected to be intrinsically harmful to the person experiencing this life. Usually, when we talk of harming or benefitting, we do so in a comparative use of these terms. We consider someone to be harmed if they are made worse off than they could have been or benefitted if they are made better off than they could have been. There are those who conceive the harm involved in a life overwhelmed with negative experiences as harmful in this comparative way. Those who use this comparative conception of harm in this context might argue that while being brought to birth and experiencing life is usually a “benefit,”Footnote 9 when life is an overwhelmingly negative experience, then it is harmful because it is a “condition is worse than non-existence.”Footnote 10 By non-existence here we might mean that death might be viewed as someone’s preferred option if they have a life that is one that is not valued by them because it is a negative experience overall. Or, in the case of reproductive choices, we might consider preventing an individual’s existence by choosing not to reproduce, not to create or implant embryos or not to continue a pregnancy as the best option for that future individual on the basis that never coming into being would be “better” for them.

However, while it is tempting to apply our usual comparative conceptions of harm and benefit when considering the idea of “life not worth living,” it is difficult to justify this approach when the other option is non-existence (either death or never coming into being). In this context, comparisons do not make any logical sense as it is impossible to compare something (being alive with a terrible life) to nothing (non-existence). There is literally nothing to compare with existence. However, even if we accept we need to move away from our usual comparative notion of harm in this context, we can make sense of these kinds of lives being harmful to those who experience them in a non-comparative way if we understand that by using the phrase “life not worth living,” we are describing an existence that is an overwhelmingly negative one for the individual experiencing it, an existence that if asked they would not value positively and one that, if they were able to choose, we might expect them to choose for this existence to end or never to have begun.

Intrinsic value and human testimony

We know that if we ask people if they value their own lives, the vast majority of people, whether disabled or not or living in conditions that others might view as challenging, claim to value their lives and the quality of their lives highly.Footnote 11 This testimony from actual individuals fits with our general cultural attitudes to the value of human life and reproduction where there is usually a general assumption that human life generally is a good thing for us and for those around us, including our children.

Of course, while there is evidence that most people value their lives despite the challenges we all face, there is also evidence that some people do not value their lives in the same positive way.Footnote 12

As such, the reported lived experience of individuals seems to mirror many common views on the value of life: that human life is a generally positive thing but with some exceptions to this rule.

There are, of course, those who argue against this view of the value of human life. On one side of this debate, there are those who argue that human life is not the generally positive experience that is assumed by this position. Those taking an antinatalist position, for example, may argue that those of us who say our life is of positive value are deluded and do not recognize the reality of our own experience as the experience of unnecessary suffering that could have been avoided by avoiding our existence.Footnote 13 As a result, the argument here would be that all human lives are actually “not worth living” or intrinsically harmful. On the other side of this debate, there are those who argue that all human life is valuable, whatever the quality of that life, and that “Life may have good and bad days, ups and downs, sufferings and joys – but it is still worth experiencing.”Footnote 14 On this view, presumably, all lives would be considered “worthwhile.”

But while not everyone agrees with the idea that there are some intrinsically valuable but also some intrinsically harmful lives, it seems that if we take the testimony of actual people seriously, then we have reasons to accept the idea that most lives are “worthwhile” or intrinsically valuable to the person who will experience that life but there are a few lives that may be “not worth living” in the sense that they are or are likely to be intrinsically harmful to the person living that life due to overwhelming negative factors. While, of course, it may be possible that some of us are underestimating the challenges in our lives or may change our minds about the positive value of our lives as they continue, if what is important is the welfare of actual people, it seems the best and most accurate way to gauge this welfare is to trust the testimony of individuals where this is available.

Determining the intrinsic value of others’ lives

In order to determine which lives are intrinsically valuable or “worthwhile” and which are not, we can, in many cases, simply ask the person who is experiencing this life whether they value their life and wish it to continue. While, of course, there would need to be stringent checks as to whether the views of a person are transient or stable, determining the value of a life of someone still able to assess their own life seems relatively straightforward. Things become more difficult when individuals are unable to make their own assessments of their own lives, either due to unconsciousness, loss of capacity, or where individuals have not developed the capacity for autonomous decision-making. However, in such cases, if an assessment as to the quality of life of such an individual is important in decision-making, it seems that a proxy decision-maker could make this assessment of the intrinsic value of this life based on the information available and with reference to the testimony of others who experience similar lives.

When it comes to the use of these terms in the area of the ethics of reproduction, things become even more complex. While finding ways to assess how an existing individual who does not have the capacity for decision-making assesses the quality of their own life is highly challenging, determining the expected quality and value of a life that has not yet begun is at least equally, if not more, difficult.

The sort of decisions we are considering in the area of the ethics of reproduction are decisions about whether an individual or individuals should bring a new human life to birth in particular circumstances that might be seen as challenging, for instance, where the parent or parents will be very young or old or facing their own physical or mental health challenges. Or it might be a decision about whether to implant an IVF embryo or continue a pregnancy where the embryo or fetus has been identified as one that will develop a condition considered a disability. In these situations, attempting to provide an assessment of whether an individual, who does not yet exist in the same way that others who have already been brought to birth exist, will be an even more challenging task. It is, of course, impossible to find out the perspective of the future individual who will experience this life, and we have little to go on in order to attempt to provide a proxy decision regarding how we think this future individual might value their existence.

This difficulty in making an accurate assessment of another’s life is compounded by the effect of unconscious thinking and bias, particularly around those with different lives than our own and in particular around disability. We know that a great deal of our cognitive activity is unconsciousFootnote 15 and that these unconscious processes draw on cultural norms and stereotypes in order to allow us to make quick decisions and assess situations and people quicklyFootnote 16. This results in unconsciously biased thinking around stereotypes of all sorts of characteristics, including, for instance, what it means to be gay, female, black, and disabled. We also have biased thinking around what it means to be overweight, live in poverty or have an older or younger mother or other characteristics. Unconscious bias involves accepting many stereotypes as part of our normal socialization, and these biases and stereotypes are often reinforced by the media. As these biases are often unconscious, we will not necessarily be aware of them and their influence on our decision-making. Further, given that these biases often conform to others’ general biases and social norms, they may be seen as “true” and again be difficult to identify and overcome.

When it comes to biases around disability, it has been suggested that “the majority of people hold unconscious prejudice towards disabled people despite consciously having low levels of prejudice.”Footnote 17 As a result, “nondisabled people may believe they feel positively towards disabled people but actually hold negative attitudes which they disassociate or rationalize.”Footnote 18 One of the reasons that ableism is thought to be so widespread is that “[i]t may be that destructive disability portrayals, representations, and stereotypes are so prominent that they are commonly accepted and not viewed as negative. As such, most people are probably not conscious of the ways their understandings are problematic.”Footnote 19 Strongly negative notions of what it means to be disabled are cultural norms in our society and thus may not be questioned.

As a result of these unconscious biases around disability, it seems we are often very bad at evaluating the quality of life of those living with a disability. This is known as the “disability paradox”Footnote 20 and is explained by Tom Shakespeare:

Have you ever thought to yourself: ‘I’d rather be dead than disabled?’ It’s not an unusual reflection. Disability, in everyday thought, is associated with failure, with dependency and with not being able to do things. We feel sorry for disabled people, because we imagine it must be miserable to be disabled. But in fact we’re wrong.Footnote 21

The paradox here is that while many non-disabled individuals view those living with disability as people with lesser welfare than themselves, when we ask those living with a wide range of disabling conditions, they consistently report high levels of quality of life, which is often equivalent or even higher than the quality of life reported by those without these conditions.Footnote 22 There have been suggestions that there is a problem with this self-reporting here and that those with disabilities are not reporting accurately.Footnote 23 However, investigation of this claim has concluded that “to date, across a wide range of studies, the best available evidence suggests that such self-reports are largely accurate.”Footnote 24 As a result, suggesting that disabled people are somehow in denial is, as Shakespeare argues, “patronising” and “insulting.”Footnote 25

But notwithstanding these issues, these are decisions that need to be made, and we can put our efforts into attempting to make these decisions based on minimizing the effects of bias, focusing on the testimony of those whose life experiences can provide us with insight in these cases regarding the projected welfare of these possible future individuals.

An external judgment of the value of a life

While the terminology of a “life not worth living” or a “worthwhile” life may focus on the intrinsic, subjective evaluation of this life by the individual who lives it, or an attempt to estimate this subjective evaluation by a proxy decision-maker, as we have seen this terminology can mean something else. The phrase “not worth living” could equally refer to an external judgment of an individual’s life, that is, a judgment from someone who is consciously or unconsciously suggesting that from their own perspective or in comparison with other lives, this life is “not worth living.”

Unconsciously making an external judgment

It may be that, like Harris, we recognize that it is important that we focus on the intrinsic value that an individual does or may put on their lives and thus focus, as far as possible, on the actual welfare of individuals. But given that, in many cases, we have no option but to attempt to calculate this value ourselves, we often end up making what can only be an external judgement of these lives.

Given that we tend to favor people “like us,”Footnote 26 have an unconsciously negative view of disabilityFootnote 27 and consistently underestimate the quality of life of those who live with disabilitiesFootnote 28, then it is conceivable that, while those who use the term “life not worth living” set out to do so in a compassionate way with the welfare of individuals as paramount, the reality is somewhat different. It is likely, in at least some cases, that instead of focusing on the experience or expected experience of those who do or will live these lives, we unconsciously make an external judgment of the quality of others’ lives. It is also possible that this external judgment may have more to do with comparing these lives to our own, or negative biases around, for example, life with disability than with a focus on the actual expected value of the life in question.

More consciously making an external judgment

If we accept that the best way to evaluate the intrinsic value of a life is to ask those living these lives or lives with similar characteristics, then it seems there are very few cases of what might be termed “lives not worth living” or intrinsically harmful lives. When we ask disabled individuals to rate their quality of life or their own happiness, we do not see a significant difference between these evaluations and the value non-disabled individuals put on their own lives.Footnote 29 As a result, it seems that we do not have reasons based on the welfare of future individuals to, for instance, prevent the implantation of a “deaf” embryo rather than a “hearing” one or to put pressure on a pregnant person to accept routine screening for Down syndrome. We know that everyone’s life contains challenges and negative experiences, but if we attempt to move past unconscious bias and trust the testimony of actual individuals, it seems that the sort of red flags that often concern us about reproductive choices do not impact the quality of lives in ways that we might be justified in viewing these lives as intrinsically harmful or “not worth living.”

Interestingly in the bioethical debate, there is a great deal of consensus about this point, that cases of lives that are “not worth living” will be relatively rare.Footnote 30 However, for many, there remains a feeling of unease about the conclusion that, as a result, it may not be wrong to choose to implant a “deaf” embryo, for instance, rather than a “hearing” one. This has led to some arguing that there are other factors that should be considered, over and above the welfare of an individual, when it comes to decisions about the ethics of certain reproductive choices that might help to explain this unease and allow us to overturn this conclusion.

An obligation to bring to birth the best child possible?

A number of high-profile bioethicists have attempted to argue that, although we do not harm someone by bringing them to birth with a “worthwhile” life, one that they are as likely as anyone else to value, we still do something wrong, in some cases, when we make this choice. Derek Parfit called this conundrum - that we appear to have a logical argument that no one is harmed by choosing to bring to birth an intrinsically valuable, disabled life, but we still find the conclusion that this choice is therefore not wrong “disturbing”Footnote 31—the Non-Identity Problem.Footnote 32 He argued that what was needed was a “Theory X”Footnote 33 that would show what was wrong with the reasoning here and thus allow the retention of the intuition that choosing to bring to birth a disabled life, rather than a non-disabled life, is a morally questionable or even morally wrong choice. Along very similar lines, Harris argues that while we have not done anything wrongFootnote 34 to the person who is born with an “impaired” life, as they are likely to have a life they value, a choice to bring to birth a disabled or disadvantaged life is still wrong because it makes the “world a worse place than it needs have been.”Footnote 35 Echoing these arguments, Julian Savulescu argues that in order to justify his arguments that it is “bad that blind and deaf children are born when sighted and hearing children could have been born in their place,”Footnote 36 we must “appeal to some form of harmless wrong-doing, we must claim that wrong was done, but no-one was harmed.”Footnote 37

Parfit, Harris, and Savulescu accept that so long as a child is expected to have a “worthwhile” or intrinsically valuable life, we have not done any wrong to them in bringing them to birth as they are born in the only condition they can be born in and with a life that they are as likely as anyone else to value. Thus, as the harm that is postulated here is not “person-affecting” if it exists it, it is argued, must be “impersonal.” Parfit suggests that this appeal to impersonal harm may explain why we might still have strong moral reasons to avoid choices to bring to birth disabled individuals or individuals who, it is supposed, would face more challenges than others. The notion of impersonal harm rests on the idea that having a life of overall positive value is a good thing, and the better the quality of life one has, the higher the value this life has. Parfit calls this the Impersonal Total Principle, saying, “If other things are equal, the best outcome is the one in which there would be the greatest quantity of whatever makes life worth living.”Footnote 38 Based on the utilitarian idea of maximizing happiness or well-being, the argument here is that the better the quality of life of the individuals who live, the bigger the total amount of this happiness or well-being in the world. Thus, on this view, the impersonal harm caused by choosing to bring to birth a child with a disabling condition reduces the total amount of happiness or well-being in the world, even though it does reduce the welfare of any individual human being.

This concept of impersonal harm is notoriously difficult to defend and highly counterintuitive.Footnote 39 For instance, it leads to some rather unpalatable conclusions, including that if we accept the importance of maximizing totals of well-being, this seems to lead to a moral obligation to reproduce as much as possible to increase these totals of well-being, even if this means reducing the overall quality of life of the population.Footnote 40 Further, on this approach, we do not benefit or prevent harm to any actual human being by avoiding the birth of disabled individuals but by improving a population as a whole. As a result, it is difficult to defend the invoking of impersonal harm to justify a choice to avoid the birth of disabled individuals against accusations of authoritarian, positive eugenics.Footnote 41 There is arguably an even more fundamental problem with the invoking of this problematic concept of impersonal harm here. The only way we can understand that the lives of disabled people count for less when it comes to ideas of cumulative total well-being, or impersonal goods, is if we reject the assessment of the quality of these lives that those people living them provide and replace this with the judgment of others who have a strong belief that while disabling conditions are usually compatible with inherently valuable lives, there are still reasons why creating these lives are not just undesirable but also immoral.

Minimally decent lives?

Other arguments that aim to solve the Non-Identity Problem claim that if we choose to bring to birth a child with a disability but an intrinsically valuable life, while we do not harm that child, as they have a life they value, we wrong this child. The argument here is that choosing to bring to birth someone with a disability rather than someone without a disability is to do something wrong to the person who experiences this life. This is often a rights-based argument where those who take this position argue a “child has a right to be born into good enough circumstances”Footnote 42 or with what might be called a “decent minimum standard”Footnote 43 or a life “in which the child has the reasonable prospect of enjoying a good number of those rights possessed by all children.”Footnote 44 The idea is that it is not enough to aim to ensure that the children we bring to birth have intrinsically valuable lives. But that we have a moral imperative to ensure that they meet a higher welfare threshold; if they do not, we have infringed on their rights and have wronged these children. Thus, it might be argued that disabled lives or lives that some consider to be disadvantaged do not meet this “decent minimum standard” of welfare, and thus choosing to bring these lives to birth should be avoided where possible.

The problem of measuring something other than the welfare of individuals

Both those who argue that there is a moral obligation to choose to bring to birth the “best” child possible and those who argue that we have an obligation to bring to birth only those lives that meet what is considered a “decent minimum standard”Footnote 45 are suggesting that the threshold between what is considered to be an acceptable and unacceptable quality of life will be higher than the threshold between intrinsically valuable and intrinsically harmful lives. Those who hold these positions generally agree that a life would need to be overwhelmed by negative experiences to be considered intrinsically harmful to the individual who experiences it.Footnote 46 They accept this threshold between intrinsically valuable and intrinsically harmful lives and the evidence that those who live with disabilities and other factors that are often thought to be disadvantageous are as likely as anyone else to value their own lives. But they do not set the threshold between acceptable and non-acceptable welfare at the threshold between intrinsically valuable and intrinsically harmful lives. Both positions set this threshold higher than this intrinsic value/harm distinction.

Setting this higher threshold for their ethical position on reproductive choices allows those holding these positions to maintain their conclusion that choosing to bring to birth a disabled child rather than a non-disabled child is, they argue, the wrong thing to do. But they can only do this if they base their position, not on the welfare of actual individuals, that is, whether a life is likely to be a positive experience for the person who lives it, but on external judgments of what is an acceptable quality of life.

External judgments of what is considered to be an acceptable quality of other’s lives will always be highly problematic. Arguing that we should make reproductive decisions on something other than the testimony of individuals who live the sorts of lives in question will be difficult to justify. When those making a judgment about what is the “best” life or what is a “decent minimum standard” do not prioritize the expected intrinsic value of these lives, that is how those who live these lives are likely to value them, we encourage the making of external judgments about these lives. These external judgments, while no doubt well-meaning, are likely to be unconsciously influenced by bias and the ableist attitudes that pervade our culture, putting an inaccurately lower value on the lives of disabled people and others who many of us might consider, from our own perspective, to be disadvantaged.

Changing the terminology

As long as I have been using the terms “lives not worth living” and “worthwhile” lives, I have been uncomfortable with this use. My discomfort about using these terms stemmed from the issue that these terms could very easily be interpreted as implying that the lives of others are externally judged as worthless and thus that those who have these kinds of lives are not valued in the way that other lives are valued. This is not the way that I and many others have used these terms. I have used these terms to indicate a threshold between lives that are of positive value to those who live them (or are expected to be of positive value to those who live them) and lives that are so dominated by negative experiences that they are a harm to that person. To clarify this and to remove this possible ambiguity around these terms, I suggested that in this context, we use the terms “intrinsically valuable” and “intrinsically harmful instead”.

There will be those who defend the use of the terms “worthwhile” and “unworthwhile” lives or “lives not worth living” and argue that these terms do not imply any external judgment of the sorts of lives that are in question here. I agree the way that these terms have been used in the bioethical literature has often been synonymous with what I wish to represent with the terms intrinsically valuable and intrinsically harmful. However, as we have seen there are positions in this debate that make these external judgments, measuring other things than whether the person in question is likely to have a life of positive value.

The problematic nature of these terms and their ability to be misinterpreted are further exacerbated by their historical legacy. Outside judgments of the worth of someone else’s life have clear eugenic connotations. These connotations of the terms “life not worth living” and “unworthwhile lives” are amplified when we recognize the echoes of the terminology used in 1930s and 1940s Germany. In August 1939, the Nazis implemented their Aktion T4 euthanasia program. Under this program, tens of thousands of individuals with physical or mental disabilities were involuntarily sterilized and “euthanized” as part of the Nazi commitment to Social Darwinism or eugenicsFootnote 47. The term that was used to describe those targeted by the AKtion T4 program was in the original German “lebensunwertes leben” and the English translation of this is “lives unworthy of life,” this was contrasted with “lebeswertes leben” or “life worth living.”Footnote 48 The use of these terms in this context was absolutely one that refers not to the value that the individual who experiences these lives puts on their life but on the value that is put on their lives by others.

I am not suggesting that any modern bioethicist is using “life not worth living” and related terminology in the way that the Nazis did. However, it is important to recognize the legacy of this use of this terminology and the lack of clarity around the modern use of these terms in many cases. Moving away from this terminology will allow us to be clearer about what is being argued when we argue that a reproductive decision is ethically unjustified. While changing the terminology here will not remove the problems of the difficulty in making accurate assessments or predictions about the intrinsic value of someone else’s life, by using the terms “intrinsically valuable” and “intrinsically harmful,” we can much more clearly indicate that what is being considered here is the welfare of an individual life in terms of the value that the person experiencing puts or is likely to put on their life.

By being clearer with the words we use in this context and by recognizing the unconscious bias that can skew proxy assessments of the intrinsic value of another individual’s life, we can improve the clarity and accuracy of our ethical arguments. There will, of course, be those who, when it comes to the ethics of reproduction, want to focus on other considerations rather than whether an individual is likely to put a positive value on their own life. By clarifying the language here, we can illuminate what is meant by different authors when they refer to the value of individuals’ lives, including whether external judgments about the value of a life are factors in these assessments.

Arguments that involve external judgments of the quality of others’ lives are, I argue, difficult to defend and risk endorsing the sort of eugenics that overrides individuals’ choices without justification.Footnote 49 Encouraging those making these arguments to be more explicit about their justifications rather than relying on linguistic conventions around “lives not worth living” that may hinder this exposition will allow the arguments here to be explored in the sort of detail that should be required, given the impact these arguments may have on policy around reproduction and on reinforcing unjustifiably negative cultural norms around disability.

Conclusion

It was my privilege to work with John Harris for over 20 years. The arguments he put forward suggesting there might be a moral obligation to eradicate disability have inspired a great deal of my own research, often in opposition to his arguments. What has also had a fundamental impact on the way that I write in this area is Harris’ clarity of expression. Being clear about what we are arguing and why is important in order to enable and encourage the interrogation, deliberation, and discussion of ideas and arguments that propel bioethical debate forward.

In this paper, I have argued that we must move away from using the terms “a life not worth living,” “worthwhile” lives, and similar in bioethical discourse. My reasons for this suggestion are that these terms are ambiguous, and can, in some uses, obscure external judgments of others’ lives that many might find problematic and that may have authoritarian eugenic connotations. I have suggested that in order to clarify these arguments and the language used to express these arguments we should replace talk of “lives not worth living” and “worthwhile” lives with clearer terms. For those whose arguments focus on the subjective intrinsic value that those experiencing their lives do or may put on them, I suggest we talk of “intrinsically valuable” and “intrinsically harmful” lives to express this focus. Those whose arguments focus on other factors should consider either adopting terminology that clarifies their position or spend time explicating the meaning behind their use of “a life not worth living.” While Harris and I often do not agree, particularly on arguments around reproductive choice and disability, what we do agree on is that in order to develop stronger positions in this area, clarity of expression is paramount.

References

Notes

1. Harris, J. The Value of Life. London: Routledge; 1985, at 100 and 102Google Scholar.

2. See note 1, Harris 1985, at 99–102.

3. See, note 1, Harris 1985, at 99–102; Harris, J. Wonderwoman and Superman: The Ethics of Human Biotechnology. Oxford: Oxford University Press; 1992, at 96 Google Scholar; Parfit, D. Reasons and Persons. Oxford: Clarendon Press; 1987, at 358 Google Scholar; Glover, J. Causing Death and Saving Lives. London: Penguin;1988, at 52 Google Scholar; Feinberg, J. Wrongful life and the counterfactual element in harming. Social Philosophy and Policy 1986;4(1):160 CrossRefGoogle ScholarPubMed; Buchanan, A. Choosing who will be disabled: Genetic intervention and the morality of inclusion. Social Philosophy and Policy 1996;13(2):28 CrossRefGoogle Scholar; Steinbock, B, McClamrock, R. When Is birth unfair to the child? The Hastings Center Report 1994;24(6):15, 16, 19Google ScholarPubMed.

4. See, for example, McMahan, J Savulescu, J. Reasons and reproduction: Gene editing and genetic selection. The American Journal of Bioethics 2023:2,4,7 and 9Google ScholarPubMed; Porter, A. Arguments Over Life Extension in Contemporary Bioethics. In: Valdés, E, Lecaros, JA, eds. Handbook of Bioethical Decisions. Volume I. Collaborative Bioethics, vol. 2. Cham: Springer; 2023, at 106, 107, 114, 255, 259Google Scholar; Purdy, LM Reproducing Persons : Issues in Feminist Bioethics. Ithaca, NY: Cornell University Press, 2018, at 72 Google Scholar

5. See note 1, Harris 1985, at 100.

6. See note 1, Harris 1985, at 100.

7. Harris, J. The wrong of wrongful life. Journal of Law and Society 1990;17(1):101 CrossRefGoogle Scholar.

8. See note 3, Glover 1988, at 23.

9. See note 7, Harris 1990, at 98.

10. See note 7, Harris 1990, at 101.

11. See for example Ipsos. Global Happiness Up Six Points Since Last Year: 73% Now Say They are Happy; 20 March 2023; 2023 October 26; available at https://www.ipsos.com/en-uk/ipsos-global-happiness-index-2023; Helliwell, JF, Layard, R, Sachs, JD, De Neve, J-E, Aknin, LB, Wang, S, eds. World Happiness Report 2023. New York: Sustainable Development Solutions Network, 2023 Google Scholar; Lin, J, Ju, Y, Lee, S, Lee, C, Wang, H, Teng, Y, et al. Do physical disabilities affect self-perceived quality of life in adolescents? Disability and rehabilitation 2009;31(3):181–188 CrossRefGoogle ScholarPubMed; O’Hara, J, Martin, AP, Nugent, D, Witkop, M, Buckner, TW, Skinner, et al. Evidence of a disability paradox in patient-reported outcomes in haemophilia. Haemophilia 2021;27:245–252 CrossRefGoogle ScholarPubMed; Jay M. Deaf Culture Values: Deafness. 15 February 2021; Start ASL; available at https://www.startasl.com/deaf-culture-values-deafness/#:~:text=It%20is%20true%20that%20many,identity%2C%20experience%2C%20and%20advocacy.

12. See, for example, Diane Pretty loses right to die appeal. The Guardian. 29 November 2001; available at: https://www.theguardian.com/society/2001/nov/29/health.healthandwellbeing.

13. Benatar, D. Better never to have been: The Harm of Coming into Existence. Oxford: Oxford University Press; 2006, at 1 CrossRefGoogle Scholar.

14. Aksoy, S. Response to: A rational cure for pre-reproductive stress syndrome. Journal of Medical Ethics 2004;30(4):383 CrossRefGoogle ScholarPubMed.

15. Wilson, T D. Strangers to Ourselves: Discovering the Adaptive Unconscious. Cambridge, MA: Harvard University Press; 2002, at 16 Google Scholar.

16. Moule, J. Understanding unconscious bias and unintentional racism. Phi Delta Kappan 2009;90(5):322 CrossRefGoogle Scholar.

17. Friedman, C. Defining disability: Understandings of and attitudes towards ableism and disability. Disability Studies Quarterly 2017;37(1)CrossRefGoogle Scholar.

18. Friedman, C. Mapping ableism: A two-dimensional model of explicit and implicit disability attitudes. Canadian Journal of Disability Studies 2019 ; 8(3):95 CrossRefGoogle Scholar.

19. See note 17, Friedman 2017.

20. Albrecht, GL, Devlieger, PJ. The disability paradox: High quality of life against all odds. Social Science & Medicine 1999;48:977–988 CrossRefGoogle ScholarPubMed.

21. Shakespeare T. A point of view: Happiness and disability. BBC News; 1 June 2014; available at https://www.bbc.co.uk/news/magazine-27554754.

22. See note 11, Lin et al. 2009; O’Hara et al. 2021.

23. Schwartz, CE, Sprangers, MA. Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science & Medicine 1999;48:1531–1548 CrossRefGoogle ScholarPubMed.

24. Ubel, P, Loewenstein, G, Schwarz, N, Smith, D. Misimagining the unimaginable: The disability paradox and health care decision making. Health Psychology 2005;24(4):S57–S62 CrossRefGoogle ScholarPubMed.

25. See note 21, Shakespeare 2014.

26. Nalty, K. Strategies for confronting unconscious bias. The Colorado Lawyer 2016;45(5):46 Google Scholar

27. See note 17, Friedman 2017.

28. See note 20, Albrecht, Devlieger 1999.

29. See note 11, Lin et al. 2009; O’Hara et al. 2021.

30. Bennett, R, Harris, J. Are there lives not worth living? When is it morally wrong to reproduce? In Dickenson, D, ed. Ethical Issues in Maternal-Fetal Medicine. Cambridge: Cambridge University Press; 2002, at 332 Google Scholar; Buchanan, A, Brock, D, Daniels, N, Wikler, D. From Chance to Choice. Cambridge: Cambridge University Press; 2000, at 224 CrossRefGoogle Scholar; Savulescu, J, Kahane, G. The moral obligation to create children with the best chance of the best life. Bioethics 2009 ; 25(5)288 Google Scholar; Wilkinson, S. Choosing Tomorrow’s Children: The Ethics of Selective Reproduction. Oxford: Oxford University Press, 2010, at 71 CrossRefGoogle Scholar.

31. See note 3, Parfit 1987, at 451.

32. See note 3, Parfit 1987, at 351.

33. See note 3, Parfit 1987, at 361.

34. Clones, Harris J., Genes and Immortality. Oxford: Oxford University Press; 1998, at 117 Google Scholar.

35. See note 30, Bennett, Harris, 2002, at 325.

36. Savulescu, J. Procreative Beneficence: Why We Should Select the Best Children. Bioethics 2001;15:423 CrossRefGoogle ScholarPubMed.

37. See note 38, Savulescu 2001, at 418.

38. See note 3, Parfit 1987, at 387.

39. See Bennett, R. The fallacy of the principle of procreative beneficence. Bioethics. 2009;23(5):268–270 CrossRefGoogle ScholarPubMed; Bennett, R. When intuition is not enough. Bioethics 2014;28:447–455 CrossRefGoogle ScholarPubMed.

40. See note 3, Parfit 1987, at 388.

41. Bennett, R. The Welfare of Future Children: Reproductive Ethics and Disability Screening. Bloomsbury; forthcoming, 82–83.Google Scholar

42. Velleman, DJ. Persons in prospect. Philosophy & Public Affairs 2008;36:275 Google Scholar.

43. Steinbock, B. Wrongful life and procreative decision. In Roberts, MA, Wasserman, DT, eds. Harming Future Persons: Ethics, Genetics and the Nonidentity Problem. New York: Springer; 2009, at 163 Google Scholar.

44. Archard, D. Wrongful life. Philosophy 2004;79(309):406 CrossRefGoogle ScholarPubMed.

45. See note 43, Steinbock 2009.

46. See note 30, Bennett, Harris 2002; Buchanan et al., 2000; Savulescu, Kahane 2009; Wilkinson 2010.

47. Silvestri, E. Lebensunwertes leben: Roots and memory of Aktion T4. Conatus 2019;4(2):65–82 CrossRefGoogle Scholar.

48. Charles, JD. Lebensunwertes leben: The devolution of personhood in the weimar and pre-weimar era. Ethics Medicine 2005;21(1):44 Google ScholarPubMed.

49. See note 41 Bennett 2025, at 127.