Medical advances have provided the possibility to screen for a variety of conditions during pregnancy. This can offer parents the opportunity to prepare to raise a child with those conditions, or to terminate the pregnancy if they determine that there is reason to avoid bringing a child into the world with the condition. The ethical evaluation of the decision to terminate a pregnancy on the grounds of the disability status of the potential child is a fraught issue. There is further context for the discussion of this issue now that gene editing in humans is making leaps forward – scientists in the US have begun using CRISPR to edit human sperm cells.
Antenatal screening is not perfect; largely the tests provide a likelihood that the fetus will have some condition. The screenings can detect physical anomalies such as spina bifida, or indicate that the fetus is at risk for inherited disorders like sickle cell anemia and thalassaemia. They also can find the chance of chromosomal abnormalities such as Down’s, Edwards’ or Patau’s syndromes. CRISPR editing of genes is still in its early stages, but the groundwork is being laid to allow scientists to edit out undesired conditions.
Some argue that to alter or terminate the fetus because it will have a condition like Down’s syndrome is morally wrong. When you opt for parenthood, they can argue, you are taking on a myriad of possible living conditions for your child. If, say, you opt out of having a child with Down’s syndrome because you of some perceived cognitive deficit involved in the condition, then what sort of parent would you be if you have a child without Down’s syndrome that has an accident or disease later in life that causes a similar deficit to develop?
Others argue that opting to have a child without disorders is a permissible choice. After all, they contend, it intuitively is morally permissible, if not obligatory, to behave in such a way to raise the likelihood that your child isn’t born with conditions that involve deficits: for example, by not drinking or doing drugs while pregnant.
What is the difference between advocating for behaviors that reduce the likelihood of certain conditions, terminating a pregnancy because the fetus has a high likelihood of having a certain condition, and editing genes of fetuses so that they don’t have those conditions?
A great deal depends on how we are conceiving of the value of individuals with particular conditions.
One significant concern in taking action to reduce the population of individuals with particular disabilities or divergences is that it expresses prejudice against those with the condition. The selection expresses a mistaken judgment about their quality of life. For many conditions, both physical and cognitive, there is growing evidence that the stigmatization of the conditions outrun the lived experience of the individuals – with self-reported quality of life reports of those living with disability not significantly differing from individuals without disabilities.
Others are concerned with the practical implications of many people making selections for children without some conditions. It is impractical to imagine that widespread use of such selection would completely eradicate the conditions (because of differing choices of parents, imperfect medicine, etc.). Therefore one worry is that the individuals with conditions in the hypothetical society where widespread selection takes place will be further stigmatized, invisible, and have fewer resources.
Disorders and standards of health are, to a significant extent, socially constructed. Infrastructure, social practices surrounding recreation and employment, and laws themselves get designed around what works for many or most people. This makes life harder for people who function differently; the socially and physically constructed world isn’t shaped to work with them. Two groups that exemplify this point well are the neurodivergent and those with different physical abilities.
Neurodivergent people have neurological variations outside the cognitive norm. Conditions include ADHD, autism, dyslexia, and other developmental disorders, cognitive disabilities and psychiatric disabilities, and potentially a host of other experiences. Behaviors and experiences associated with these conditions are socially marginalized because of their divergence from what society perceives as normal.
In the last decades, the physical world of the US has been altered to be more inclusive to those with different physical abilities. Whether you can hear or reach over 4 ft high or climb stairs or hold objects steadily or lift 20lbs should not preclude the spaces you access or the opportunities you have in life.
The disabled body is created largely through a lack of accommodation, not an intrinsic worthwhileness of particular lives. Disabilities can be understood as authentic forms of human diversity, living lives that may be different from a perceived normal, but not less valuable. Different perspectives, abilities, and ways of approaching the world add to the value of society. The diversity of human experiences enhances relationships and promotes progress in multiple spheres, helping address more questions facing humanity because more minds could be at work, and adding to wealth of experience in technology and arts.
Frank Stephens, an actor with Down’s Syndrome, is an active advocate for disability rights and spoke in front of Congress about the rich quality of life possible with his condition and the contribution of neurodivergent people to our society. The Autism Self Advocacy Network, along with other groups, argue that attempting to find a “cure” to autism is misguided, that autism is a natural occurrence of a neurological variant.
As a society, we need to be invested in plastic modes of engagement in recreation, employment, and schooling that support diverse bodies and minds actively socializing. People experiencing life with disorders and conditions should be the authorities on their quality of life, and inform parenting choices and the direction of scientific experimentation. In a society that supports the experiences and lives of people with autism and allistic people equally, for instance, the question of whether to select for an allistic child may become a similar ethical question to the selection for eye color.
Thanks for the eloquent post, Meredith McFadden. One question is how to integrate the value that (visibly or invisibly) disabilities can provide. So, for instance, we have the third-personal, social, neutral evaluation that is exemplified by Singer and the first-personal, individual, lived evaluation exemplified by Harriet McBryde Johnson. One of the most helpful pieces on this topic that I have come across is Hopwood’s (2016) contribution to the Journal of the APA [https://doi.org/10.1017/apa.2017.1], where he suggests that the relevant difference is a deep methodological point about how value is aggregated. Do you have a position on how this value should be counted? At some points, such as when you discuss the diverse viewpoints, suggest that you are open to the kind of third-personal, social additional value, so we don’t need any new methodological tools (there is extra social value in having neurodivergent contributions, for instance, which can be helpful in solving problems or creating goods in new ways). But I was curious if you also have a position on this more radical claim that some sorts of value cannot be aggregated or included and we need a different methodological approach to properly incorporate differently lived experience. If so, of course, I’d be curious how that kind of approach could be fleshed out.
“A great deal depends on how we are conceiving of the value of individuals with particular conditions.”
Frankly, the whole issue hangs on where one stands on the ethics of abortion. If one thinks that the fetus has no moral status, then of course it’s okay to kill fetuses with disabilities; they didn’t have a right to life in the first place. Alternatively, if one thinks that the fetus does have moral status, then of course its immoral to kill disabled fetuses – they have a right to life, and this is so even if they have a disability.
In other words, this whole issue seems to me to reduce to the ethics of abortion.
Kian Mintz-Woo,
Thanks for your thought-provoking response! I confess I hadn’t thought particularly about how to analyze the value of different groups of people – I take it that there are multiple dimensions along which people have value and contribute value. That said, here are some thoughts about societies and individuals; sorry if I miss your main point, please feel free to follow-up!
In principle I am suspect of the third-personal, aggregate view of value, and I am sympathetic with the discourse around McBryde Johnson’s disagreement with Singer. The best I can characterize the third personal evaluation of societies is that one that takes the personhood and experiential knowledge of its constituents seriously is better than one that doesn’t.
I have a hard time imagining a scenario in which a society that takes more of its population seriously in this way (by say, implementing polices, establishing an economy that accommodates the diversity of experience and ability, providing inclusive education, etc.) is not better than a society that takes less of its population seriously in this way. [It seems to me that if Society A takes 80% of its constituents seriously and Society B takes 65% of its constituents seriously, the way to imagine Society A as worse is if the method of discrimination between those individuals or groups taken seriously or stigmatized/neglected is itself pernicious, whereas Society B’s 35% not being respected appropriately may just be unlucky. This may point to a concern with the measure – can you be taking all these people’s interests seriously and have such results? I don’t know.]
I am committed to the notion that whatever standard we have for a life being worth living, we need to take seriously that there is a huge swath of people who self-report living a good life. Those lives are meeting what I consider to be a pretty high bar of “lives worth living”. I don’t, though, think that adding up all the lives that are worth living, however measured, makes for a valuable society.
Thanks for the paper recommendation, I’m going to be looking into that!
-Meredith
AMD,
Thank you for your response!
I think for many people the question of the ethics of abortion does loom large in this discussion. If abortion itself is not morally permissible at any stage of gestation where we could test for potentially relevant conditions, then some of this discussion may be moot. However, I think some medical advances make the issue of selecting out perceived disability broader than the question of the acceptable conditions for termination, as perhaps I should have brought out further here.
For instance, with IVF, multiple embryos can be developed for implantation and Preimplantation Genetic Screening (or PGS) is offered to potential parents if they want to scan the chromosomes for some potential defects. This would not involve terminating a pregnancy in progress, but rather selecting which pregnancy to pursue.
In the future, another reproductive choice may be possible beyond terminating an established pregnancy; namely, genetic interventions that would aim to eliminate particular conditions. This year, a researcher at Columbia University has attempted to eliminate a gene associated with Alzheimer’s disease in a human embryo, for instance.
Thus, even for those that take terminating pregnancies to be impermissible, there remains fraught moral questions about selecting out disability as reproductive choice. For those that take it that terminating pregnancies are morally unproblematic, I hope I articulated why these particular grounds for selection perhaps ought to give us pause.
-Meredith
Dear Meredith,
Thanks for the response. I imagine you’ll like the paper. It’s really lucid on a tricky question.
You write “I have a hard time imagining a scenario in which a society that takes more of its population seriously in this way is not better than a society that takes less of its population seriously in this way”.
Here are two ways that that society could be worse. The first is that this kind of taking people seriously is costly; it requires a large amount of action on behalf of the society (hopefully with people who have good intentions, but even with the best intentions it can be hard to really get in another’s shoes, especially when that person’s experience is very foreign). The second is that this kind of taking people seriously is invasive; it would require a large amount of information which would infringe on people’s privacy since often the kinds of phenomenal experiences associated with being disabled are highly difficult to capture and complex and hard to process or even verbalize. A society which gathered this kind of information would have access to dangerously large amounts of information which would be easily abused (e.g. by the medical industry in avoiding expensive patients).
So there are a couple issues that could make the situation more complex than you are painting.
Hi Kian Mintz-Woo,
Thanks for following up!
It is tricky to put substance on the abstract values I tried to articulate there, that’s for sure. For what its worth, I take it that radical revision of the structure of society would be required for it to take its constituents seriously.
In an ideal scenario, a society may have general understanding of the ways in which people engage with the physical spaces it creates and the social spaces it encourages, and this understanding could either lead to a maximally inclusive and supportive community, or one that is not maximally inclusive in set-up but maximally accommodating modularly (given needs, will have accommodation). If we’re talking ideals, I go with the former option.
Regarding privacy: During the gathering of the sort of understanding required for the ideal revaluation of society, there may be some concerns with privacy or articulation to research the diversity and ways people engage and feel about their engagement with the world, but with adequate social science research ethics, this rough idealized plan seems ok.
Further, if this were possible, such an ideal society once up and running, radically different than our own, may not need to delve into individual’s privacy or raise data concerns and instead should be focusing on a revaluation of society itself and its structures. The understanding gleaned from the information gathering stage could be informative regarding the ways people are in all their diversity, helping the society to aim at inclusivity so that there aren’t “those that need intervention” or a public divulging what intervention they need. So, once this utopic system is off the ground, privacy issues may not loom large.
This may be too detached from reality and a utopia dream. For instance, I have a hard time seeing that it would be costly to take people seriously as a problem. It is what societies are for, in my view, and they are doing a bad job insofar as they are only ‘for’ some of their people.
Practically speaking, with current commitments to productivity and capitalism, this can be a hard ideal to imagine; what would it look like to encourage and support lifeways that don’t have what our society currently conceives of as a clear “pay off” or contribution to the “economy” (scare quotes because of the difficulty in determining the impact of one’s life and behavior on the economy) ? It would require a revaluation of what it means to be of value to society, and a different perspective of the cost of supporting individuals.
Society is valuable because of the support it gives to its constituents, in my view, so I am biased with these questions and this is, admittedly, a side of the issue and literature I should delve further into. I’m sorry if this was more of a tangential ramble than a response!
-Meredith
Hi Again,
Here’s maybe a different way of putting how I’m thinking about the values involved here. For a society to determine that those with disabilities will not be born is pernicious discrimination.
Discrimination is bad and it is wrong. Its wrong because it to some extent prevents people who have claims to be full members of a community realize those claims; it undermines potential identity as a member of a group through disrespect. Discrimination is bad because it makes the community attempt its projects with less than its full membership – as, say, Western Europe attempting to progress in science, the arts, social sciences, etc., with only rich white males for centuries was harmed by discriminating against portions of the population. Collective understanding of what it means to be human is narrowed and incorrect, and there becomes a skewed perspective working on any given project when groups are excluded. I think there are myriad other ways discrimination is bad and individuals can be harmed by it, but these reasons operate at the group level to give us cause to frame the questions of selecting against disability as matters of justice, I take it.
Sorry for the double reply! I’ve appreciated the chance to continue thinking about this!
-Meredith
While I aimed for a quick and accessible piece, I should have also included a quick bibliography of the great work being done in disability ethics that helped inform where I was coming from in it. Here’s a short and sweet biblio:
Barnes, Elizabeth (2014) “Valuing Disability, Causing Disability” Ethics (125) p 8-113.
Bognar, Greg (2015) “Is Disability a Mere Difference?” Journal of Medical Ethics (42) p 46-49.
Brownlee, Kimberley and Adam Cureton(2009): Disability and Disadvantage. Oxford: OUP.
Adam Cureton (2015) “Advantages of Having a Parent with a Disability” Journal of Medical Ethics (42) p. 31-34.
Davis, Lennard J (1995): Enforcing Normalcy: Disability, Deafness, and the Body. London: Verso Press.
Edwards, SD (2004): “Disability, identity, and the ‘expressivist’ objection’. The Journal of Medical Ethics (30), p. 418-20.
Harris, John (2001): “One principle and three fallacies of disability studies”. The Journal of Medical Ethics (27), p. 383-87.
Kahane, Guy and Julian Savalescu (2009): “The moral obligation to create children with the best chance of the best life.” Bioethics 23 (5), p.274-90.
—(2011): “Disability: A Welfarist Approach”. Journal of Clinical Ethics 6 (1), p. 45-51.
Guidry-Grimes, Laura and Elizabeth Victor (2012) “Vulnerabilities Compounded by Social Institutions” The International Journal of Feminist Approaches to Ethics (5.2) p 126-145.
McMahan, Jeff (2005): “Causing disabled people to exist and causing people to be disabled”. Ethics (116.1), p. 77-99.
—(2005) “The Morality of Screening for Disability.” Ethics, Law and Moral Philosophy of Reproductive Biomedicine, (10), p.129-32.
Overall, Christine (2006) “Old Age, Ageism, Impairment and Ableism:
Exploring the Conceptual and Material Connections” National Women Studies Association Journal, (18), p 126-137.
Hi Mrs. McFadden,
I am currently a college student in a bioethics class writing my term paper criticizing this particular piece of yours. It would be very insightful if you had any responses to my counter arguments.
You argue that disabilities are not intrinsically bad rather we as a society reduce the worth of a disabled persons life through lack of accommodation. An example is someone in a wheel chair who would like to enjoy a movie, however the theater is not wheelchair accessible.
My response to this is that despite disabilities being inherently bad they produce bad outcomes for the disabled individual. Even if it is the environment that is the fundamental problem we need to consider disabilities in tandem to the environment they will be in. For example there is nothing wrong with being left handed, however if you were to be born 40 years ago left handed and attended a catholic school you were probably going to have worse life than someone who was right handed and as a result it can be argued that whatever the exact reason, being left handed then was bad and if given the option embryos that have the right handed trait should be selected for.
Secondly in your paper you say that the disabilities create diversity, which in turn helps produce novel solutions to issues that plague society as a whole. However cant it be argued that disabilities while good for others (because we have new ideas and more progress) are still bad for the individual. Take for example a depressed artist. Their work may be genius and great for society as a whole, but the individual still suffers. Also wouldnt this ideology be using disabled individuals as a mere means, which would be a violation of their humanity according to Kant.
thank you for your tine
walli
Hi Walli,
Thanks for engaging so thoughtfully with this piece! I’m glad to follow up with you!
I’m going to touch on your second point first. When I make a claim about the value of diversity, that is a quality of society as a whole. So, I am saying something like: “A society with more diversity is better than a society with less”. I agree that seeing the value of individuals purely in terms of their contribution to society is disagreeable, if not objectionable. In the context of this discussion, I do think it is fair to say that beyond my rough evaluations of societies, where diversity is a good that societies can bear, being a member of a diverse society is better than being a member of a uniform/homogenous society. Note, however, that an individual isn’t “diverse”. Individuals benefit from being in societies that embrace inclusion and support diversity because they may be more assured that whatever qualities they possess, they would not be grounds for exclusion from the society.
(I agree with what may be an underlying commitment of your paragraph that someone with a condition they would seek intervention and treatment for should not continue to have the condition because it adds to the diversity of society, but there it is my value for respect for autonomy that would kick in, I’d think.)
Regarding your first point, it seems to me that we agree, to a degree. The disadvantages involved in having what we’d call a disability come to a large extent from the ways that we interact with the environment. (This is the case for everyone – the quality of your life is determined by some ephemeral “traits” and how they interact with the environment, whether you have what would be classified as a disability or not.) So, taking up your example, if I use a wheelchair and move in a space that doesn’t accommodate movements with wheelchairs, my life is less convenient than if I didn’t use a wheelchair. So, it is the physical space in the case where I use a wheelchair, just as it is the social mores that make my life less convenient if I was living with disadvantage due to being left-handed, that alter the quality of life for those that live lives with that feature.
I take your point to be that we can acknowledge the environmental aspects in determining quality of life, but then we still can use quality of life as a factor in deciding whether lives are worth living, or something around that idea? I remain troubled. Selecting for right-handedness could be understood as pernicious in all the ways that I characterize that selecting against our current understandings of disability may be pernicious. I may be modus-ing your tollens here, but the very contingent factors that make lives more difficult or features be considered undesirable make me more moved to improve lives, and question the underlying assumptions behind the undesirability, rather than create fewer people with the features deemed undesirable.
One motivating thought is that we aren’t a safe enough society to make some of these choices around what life is like for people, and we aren’t making lives better for groups it is difficult for. We are barely decades out, in the US, from federally funded sterilization programs of Mexican-origin women in California and have a legacy of sterilizing black Americans. It is harder and more dangerous to live your life as queer, trans, non-white, non-citizen, or any non-man in the US. Does that mean we should be selecting for any of these identities? I think decidedly not, and I have a difficult time seeing disability as in principle different.
The best press against these lines of reasoning, in my opinion, is the appeal to respect for autonomy and in particular reproductive freedom. Having a child is an enormous undertaking, which prima facie should garner it some moral space for shaping that part of your life as you will. That does not, however, make it immune to questions of justice. The task of balancing our responsibilities to live our lives so that having children makes sense with our own values, and, further, respects others and fulfills our other duties, is no easy undertaking.
Hopefully this gives you a more filled out lay of the land, as I see it, at least!
Best,
Professor McFadden
Thank you so much for the response professor,
You have not only given me a lot to write about and discuss in my paper, but to actually think about and ponder over. Thank you again for taking the time to respond.
-Walli