Some things to consider:If it seems like this is a heavy discussion, it should. The current prenatal screening debate carries within it some of the deepest issues facing mankind. What makes life valuable? What makes a person worthy of life and love? What things in this world can we—and should we—try to control? What is too imperfect, too expensive, too much of a burden or just too undesirable?
- Even “perfect” scores in prenatal testing cannot guarantee a person’s ability, health, happiness, achievement later in life. In having children, there are no guarantees.
-Ability is a continuum. We all fall somewhere on the spectrum, and are more or less “able” in the various areas of lives. Disability is part of the human condition. Fear or discomfort with disability is natural, too, but is often overcome with information and experience.
-Most parents, even those whose children do not have a specific diagnosis, say that being a parent is one of the hardest jobs out there. Yet, most parents would also say that the time, energy and money it takes to raise their children is entirely worth it. Parents of children with Down syndrome are no different. It doesn’t take a saint or a hero to love someone with Down syndrome. The loving part comes as naturally as loving anyone else.
-Economic (cost-benefit) arguments which rationalize people with Down syndrome (and other “genetic defects”) out of existence may make logical sense, but are morally bankrupt. We are not talking about things, we’re talking about people.
-“Human” cannot be taken out of the human condition. We are not robots, or genetically engineered creatures devoid of morality and at the same time guaranteed to achieve and to be free of health issues or “problems” ourselves. Being “human” means that there are complexities of condition and of mind that set us apart from animals and machines. Unlike robots, we do not fully function without compassion, empathy, values, or morals. Our conscience—and our awareness of our own imperfections--is an essential part of what it means to be human.
Yet we’re seeing a common theme in today’s thrust for universal prenatal screenings: there are those among us who are too expensive, or too burdensome to live. Today, we're talking about people with Down syndrome—people with unique challenges who can, and do, live happy and vibrant lives. This line of thinking could apply to any one of us at some point in our lives. Every single one of us needs extra help at times or will need extra help—possibly a significant amount of extra help—at some point in life.
The debate over the newest forms of prenatal screening has elicited arguments from all of the angles we would expect, as each individual is coming at this from his or her own set of values and considerations. But at its core, this debate isn’t about politics or religion. It isn’t even about being “pro-life” or “pro-choice”—terms which have embedded political and religious connotations and labels that are not mutually exclusive. A person can hold a belief that the government shouldn’t be able to tell us what to do with our bodies and at the same time can still value all life. No one can know another person’s whole story, or the circumstances surrounding a pregnancy.
This is about making sure expectant parents get all the support and information they need to make informed, educated, thoughtful choices. It’s about having our eyes wide open and understanding that we’re at a critical point in the history of civilized societies. We now have the capability to “know” all sorts of information about a person before birth. What we do with the technology we’ve developed and how we use that information is our choice to make.
At the very least, an increase in solid, balanced information on what life can be like with a diagnosis of Down syndrome (or other detected conditions) must accompany the increase in testing.
This issue is too important for any of us to sit on the sidelines. Get involved in helping others to understand what these tests do, and what they mean. Take the time to educate yourself on all aspects of this debate, and to discuss with family and friends.
Here are some questions to encourage and inspire further discussion:
· What makes life valuable?
· In what ways are you more and less “able”?
· Which potential hardships trump the value of a life (realizing that we’d be speculating about the impact of those potential hardships)?
· Chromosomal abnormalities (not all of which are incompatible with life) are the current focus. Which condition is next? Do you or a loved one have—or are you predisposed to—diabetes, breast cancer, alcoholism, mental illness, autism, learning disabilities, or any other condition or diagnosis others may feel is “expensive” or a burden to them? How would you feel if a prenatal test was developed to detect any of these conditions for selective termination?
· The technology is here and will continue to advance. Where do we draw the line? For example, what happens when prenatal testing is applied to particular preferences (such as eye color or sex of the baby)? If we can engineer humans for intellect, beauty, athletic prowess or career success, should we?
· Should the doctors who recommend prenatal tests be required to provide accurate and balanced information about any condition detected through the testing?
Which questions do you think are most important for understanding the critical issues in moving forward? Please join the conversation.