Food for Thought

The ‘disability rights’ critique of prenatal testing

Many disability rights activists and disability scholars (researchers who study disability) criticize prenatal testing. They view the issues raised by disability, such as limited opportunities and barriers to access, as caused by our social and physical environment, and not necessarily by the individual’s genetic or physical traits. They also reject the view that people with disability necessarily have worse lives than other people.

Research shows that people without disabilities tend to think that people with disabilities are not satisfied with their lives. It can be difficult for a person with “typical” function to imagine themselves or their family members living with a disability and being satisfied with their lives. This may be because of social bias, a lack of lived experience, or experiences with people with disabilities who grew up during times when support and services were not available.

But in fact, most people with disabilities, including Down syndrome, are very satisfied with their quality of life and say that they are happy. Research shows that people who do not have experience with Down syndrome tend to choose pregnancy termination because of a Down syndrome diagnosis. People who do have experience with Down syndrome choose to terminate a pregnancy after such a diagnosis less often. This means that women and couples should be as informed as possible about the conditions they choose to test for, and what it is like to live with them.

Those who criticize prenatal testing for harming disability rights believe that:

1. Prenatal testing for disabling traits sends hurtful messages to the people living with the conditions that are being tested. This first point has been highly controversial in philosophical debates. Many people think that when an individual or a couple makes a personal medical choice, this hardly sends any “message”. This choice may express a preference to avoid raising a child with a disability, without expressing any negative attitude about individuals already living with such a disability.
2. The existence and popularity of prenatal testing promote a views that stigmatize people living with the conditions that are being tested, such as Down syndrome. It also fosters negative attitudes towards parents who choose to have a child with Down syndrome.
3. There is social value in genetic diversity and in the experience of disability. Following this line of thought, they believe that society would be losing something important if there were no more (or less) individuals living with Down syndrome because of individual reproductive choices.
4. More resources should be directed towards integrating disabled people into the social and working environment, instead of trying to prevent disability by selective reproduction.
5. Preference for ‘typical’ children is often based on misconceptions about what it means to live with disability or to care for someone with disability.

The “disability rights critique” is not generally directed at individuals who choose to use prenatal testing or abortion. Rather, it is directed at political leaders who create and maintain the social and economic conditions under which people with disabilities and their families live. The critics argue that these conditions often create barriers to opportunities, and these barriers encourage women and couples to make decisions to avoid disability.

A person may support social change to increase the resources and opportunities available to individuals living with disabilities and their families, and still prefer to avoid having a baby with Down syndrome or other disabilities.

Some people ask themselves whether in the current social circumstances, individuals feel truly free to make their individual choices. Do healthcare professionals have a negative bias towards people with disabilities and do they express this bias to parents expecting a child with Down syndrome? Do they feel limited due to lack of resources and support? Do they sometimes terminate a pregnancy because they are concerned that they will not be able to adequately care for a disabled child? Is promoting diversity on the one hand and offering prenatal testing on the other paradoxical? These are issues to consider and address as a society, so that people can accept or reject the offer of prenatal testing in a free and voluntary way, based on their personal preferences and values.

The procreative beneficence argument

Some people argue that we have a moral obligation to use every available option to select a child that has better chances of living a good life. This could mean not only prenatal testing, but even costly technologies that allow to select which child to have, such as in-vitro fertilization (IVF) with pre-implantation genetic testing (PGT) of embryos to decide which one to implant in the uterus.

This argument is called ‘procreative beneficence’ – the view that we have a moral duty to select the child with the ‘best’ chances of a good life. Those who support this view admit that other considerations can be more important than this ‘obligation’ to select the child with the better chances. For example, the costs and health risks related to reproductive technologies such as IVF could justify not using them. Likewise, if pregnancy termination is not an acceptable option for a woman or couple, they may also decide not to fulfill their so-called ‘obligation’.

The argument of ‘procreative beneficence’ raises questions about what it means to have a ‘better life’. How do we define health and illness, capacities and disability, and the good life? And who gets to decide what these things mean? For example, from their own point of view, people with Down syndrome, or with other disabilities, do not necessarily have a worse life than others.

‘Procreative beneficence’ is also problematic because it raises the question of who actually benefits from it. It would be strange to argue that a fetus with Down syndrome ‘benefits’ from not being born. The life of the child it could become is unlikely to be so bad that it would have been better for him/her not to be born at all.

But once this fetus is ‘screened out’, if the woman conceives again, another fetus ‘benefits’ and a different child is born. From this perspective, terminating a pregnancy does not benefit the individual that is being ‘screened out’, except in cases where the disease or condition lead to such terrible quality of life, that it is better not to be born at all. For example, some argue that Tay Sachs disease is so awful, considering there is no cure and it leads to an early painful death, that a baby is better-off not being born at all, than being born with Tay Sachs.

Some people feel that they should select a ‘healthier’ embryo/fetus based on the interests of their existing children. They feel it would be unfair to burden them with a sibling that requires more care and support. Some people also feel that it is their own lives that would be made considerably worse if they had a child with special needs. Some people would say that the birth of a healthier or an intellectually typical person is simply “better” in itself than the birth of a person with health problems or a person with intellectual disability.

These beliefs are very personal, and these perceptions of disability are very subjective. Research does not show that families raising a child with special needs necessarily struggle more than other families.

Some other supporters of prenatal testing and other forms of selective reproduction argue that it is better for society to avoid the birth of people with significant needs. They argue that it is a good thing to help society become healthier.

This type of thinking has been historically termed “eugenics” – a desire to improve the gene pool of a given society. In the past, eugenic projects have guided policies that were discriminatory, unfair, and even violent, including policies such as forced sterilizations. Eugenics ideas ended up underlying the Nazi ideology and led to the mass murder, during World War II, of millions who were deemed ‘genetically unfit’.

Today’s supporters of prenatal testing distance themselves from such ideas. They make it clear that prenatal testing is meant to be used (or not) by individuals for the benefit of individuals, not societies. This is sometimes called ‘liberal eugenics’, because it focuses on the choices made by individuals, not policies that are promoted or enforced by governments. Yet, the historical shadow of eugenics remains and makes some people uncomfortable about the idea of ‘selecting children’ because it can be difficult to distinguish between social circumstances and individual choices.

Kaposy, C. (2013). A disability critique of the new prenatal test for Down syndrome. Kennedy Institute of Ethics Journal, 23(4), 299-324.

Rapp, R. (1988). Moral pioneers: women, men and fetuses on a frontier of reproductive technology. Women & health, 13(1-2), 101-117.

Rothman, B. K. (1986). The tentative pregnancy: Prenatal diagnosis and the future of motherhood (Vol. 1). New York: Viking.

Savulescu, J. (2001). Procreative beneficence: why we should select the best children. Bioethics, 15(5‐6), 413-426.