Suppose you are expecting a baby and the obstetrician or genetic counselor tells you that they detected your future child possesses a gene which is associated with the development of amyotrophic lateral sclerosis (ALS). This neuromuscular disease with its severe progressive muscle weakness doesn’t usually begin to exhibit itself until after age 40. It’s early in the pregnancy and abortion is still an option. What would you do? What if it were spinal muscular atrophy, some forms of which can to cause developmental delays and disability in infancy or early childhood?
As I mentioned in my last post, new non-invasive prenatal screening testing is becoming available for known genetic abnormalities such as Down Syndrome. These tests are likely only the tip of the prenatal genetic testing iceberg. As maternal blood testing for fetal DNA becomes better established, more and more tests for heritable illnesses such as Huntington’s Disease, autosomal recessive conditions such as cystic fibrosis, as well as tests for conditions known to be associated with specific genetic changes, will become available. Similar issues are already arising in pre-implantation genetic testing in infertility treatment. Soon we are likely to see expectant parents be presented with the ability to glimpse their child’s future risk of developing many illnesses.
Examining the implications of this type of testing leads to a cascade of ethical issues, but the one I would like to examine here involves what we do with the information received from these tests when they indicate a chance that a serious medical condition or disability could result. Should a pregnancy be continued when it is known that there is a chance of serious illness or disability?
Some argue that we may have a moral obligation to prevent devastating disease for our children if we can. They propose that if we can reasonably predict that a fetus or embryo would develop a devastating condition, that the pregnancy should not be continued or embryo not used. Not only would this decrease individual suffering (since the person would never exist to suffer), but from a utilitarian perspective it would relieve the community of the burden of providing for a chronically ill or disabled person and, they argue, improve societal well-being.
Bioethisist Dan W Brock addresses why this is not so simple from the individual perspective. Certainly a person with a disability is likely to have more hardship and suffering in their life than someone without a disability, but as he explains:
The difficulty is that it would not be better for the person with the handicap to have had it prevented since that can only be done by preventing him from ever having existed at all; preventing the handicap would deny the individual a worthwhile, although handicapped life. (Vaughn, 525)
Many people with disabilities perceive for themselves that they do lead a satisfying, rewarding life and feel that the quality of their lives is not always overshadowed by the suffering they may experience or the burden of having to cope with a serious medical condition.
And while people with disabilities may require medical services a “normal” person doesn’t or may need adaptive technologies to perform tasks or travel, many do provide valuable contributions to our communities and society as a whole. Might their presence and participation in society have enough value to outweigh the “burdens” of providing services or accommodating their differences? What if baseball player Lou Gehrig, actor David Niven, theoretical physicist Stephen Hawking, or Sesame Street creator/writer Jon Stone, all people who developed ALS, had never been born. Can we honestly say that society would be better off without them? Even if we disregard the set of exceptional people, think of the people in our own daily lives with disabilities of any kind. Sure, if they had never been born in the first place and you had never known them you would not appreciate their absence. But, consider, would your life actually be better had they not existed? Have you personally suffered, is your life or society as a whole worse because of them? Or, has your life been enriched in some way through knowing them?
Some people with disabilities are concerned that identifying birth defects and chromosomal abnormalities and being able to avoid the birth of children with such conditions minimizes the importance and value of those with these conditions as people. In Bioethics: Principles, Issues and Cases, Lewis Vaughn quotes bioethisist Johnathan Glover as disputing this:
Much of what is involved in inequality of respect is compatible with screening. Aiming for the conception and birth of normal people, for instance, is perfectly compatible with insisting that the rights of disabled people are fully respected and with seeing them as equals. Medical treatment presupposes that health is better than sickness, but those who believe in it treat sick people as their equals. (p 525)
I see his point about medical treatment, but I feel that the fears of people with disabilities are valid. If it is decided (whether formally such as thorough the recommendations of medical societies or informally though a shift in cultural values) that the birth of people with disabilities is something that should be avoided, those people that do develop, or are born with, disabilities are likely to be marginalized and viewed as less valuable and unwanted. Will our society then directly or indirectly increase their suffering by not meeting their needs, not as aggressively treating co-existing medical problems or complications? Will we see a trend back towards institutionalizing such “high need” individuals if disabilities becomes rare and socially undesirable or even unacceptable? I don’t think it’s unreasonable to imagine such possibilities; if fewer people need accommodations or special care, there is less incentive to provide those services and more financial cost per person affected. Those with disabilities or special needs will then become increasingly isolated, likely adding to their suffering and decreasing their ability to live fulfilling lives and the chance to participate and contribute to society.
Another aspect of the theoretical attempt to eliminate the birth of people with disabilities, is one of distributive justice. People with less access to health care, be it geographically because they live in rural Montana or a developing country or because they cannot afford prenatal care will then become the people most likely to conceive and deliver children with the potential for disabilities. For the same economic and geographic reasons, these families will be in the worst position to care for such disabilities.
I can appreciate that, yes, accommodating and caring for people with disabilities or serious medical conditions can impose burdens on society. There is certainly an economic burden in ensuring appropriate health care and in providing adaptations to buildings, transit, etc, to accommodate the special needs of people with disabilities. Those people closest to someone with a disability and having to provide care and assistance face additional burdens that society at large does not perceive. I can also see that, yes, some people with disabilities may suffer both physical and mental pain that may impact their quality of life and undoubtedly for some it is even unbearable suffering so that they would prefer not to exist. However, I find the utilitarian viewpoint that the burden of caring for these people and the suffering they endure adversely impacts society to the point that we would be better off if they had not been born very difficult to accept.
As prenatal genetic testing becomes more readily available, we as individuals and as a society will be faced with these issues. We must consider who determines what defines the quality of life of a person that has not yet been born. Is it even possible to do so? If it is, should this be solely at the discretion of the parents? Is any negative impact on society as a whole great enough for communities or governments to issue mandates regarding efforts to avoid the birth of people with disabilities? Is there some level of acceptable risk? Should we only be concerned if the risk is more than 50% that a disability may result or should we have a zero tolerance policy and terminate any pregnancy with a chance of disability? What do we include in a list of disabilities to prevent? Blindness or deafness? Dwarfism? ALS? Down Syndrome? Huntington’s? What about a risk for chronic medical conditions like diabetes? Does it matter if it’s a condition that presents at birth or in the first two decades as compared to something that develops later in life after a person has had a chance to “contribute” and experience a “meaningful existence”?
Our ability to test for variations in genetic information is outpacing our understanding of genes and their role in disease. I think it is important that we keep this in mind as we decide what we test for, how that information is provided to families, and what recommendations are made. I feel families must make decisions about having or not having children based on their own needs, desires and beliefs. I am not convinced that attempting to eliminate the birth of all infants who may go on to develop a specific trait, disability or illness is the right thing to do.
Vaughn, L. (2013) Bioethics: Principles, Issues and Cases. New York, NY: Oxford University Press.