What’s God got to do with it?

I’m a real sucker for animal videos on YouTube and came across this edited version of an earlier post which I had enjoyed a lot. The new one added a very lovely musical background and several captions. (Cllick “Read More” if the video isn’t visible yet.)

I have to ask about one caption, though, “What is ‘God doesn’t make mistakes’ supposed to mean?” It’s one thing when a little girl says “God didn’t make a mistake when he made me” (the source of the caption). Her parents gave her a way of forestalling those who would look down on her or who would criticize their choice to cherish her.

I understand it is used to celebrate the value of lives affected by genetic anomalies. But, please!! I dare to object because (1) it implies that God directs the creation of every individual life (otherwise the results could hardly be considered by anyone as a mistake made by God) and (2) to be consistent, the same would have to apply to all children born, regardless of degree of malformation. If you have ever been to a human genetics conference and perused the poster session (thousands of posters), you will appreciate that Down Syndrome is relatively speaking, a very mild condition. The quality of life is marvelous in comparison with many infants who survive far more devastating genetic defects (one definition of “defect” being “mistake,” I suppose). In such cases, it is a whole lot harder to buy the idea that there were no errors (mistakes) involved in that individual’s development. Seeing the more extreme cases helps one appreciate that at what point some might decide to terminate is indeed relative and a difficult personal decision. The infants that survive many genetic problems are exceptions in that in the majority of similar cases, “nature (God?) takes its course” and spontaneous, natural abortions occur. Perhaps in recognition that a mistake had occurred?

Yes, the bond between the child and his dog is incredible and very touching. It enriches life to focus on the emotional wealth that humans (and animals) can have that makes life worth living in the face of intellectual challenges and unusual appearances. That certainly does not mean that each embryo is the result of some divine plan (Is it God that prompts people to have sex on any particular occasion?). To suggest that diminished the video for me, needlessly and pointlessly.

Between a Rock and a Hard Place

© Greg Epperson

That’s how a one might feel if she or he is concerned about genetic risk but conscientiously objects to reproductive technology (reprotech). And if one’s risk is not X-linked (see preceding blog entry), then even natural sex-selection isn’t going to help as boys and girls will be at equal risk of inheriting the disorder involved.

Here is where one must take a good, long look at “risk.” Just what does risk involve? What does it mean to you as an individual?

The same risk factor (a numerical estimate that your genetic counselor computes from many pieces of information) can be viewed as minor or overwhelming.

Your risk perception depends on a number of things:

Do you have experience with or personal knowledge about the condition?

© Jaren Jai Wicklund

Your own experience will affect how you perceive the severity of the condition which, in turn, will affect how daunting a particular risk estimate seems to be. Where there have been adequate supports to help the affected person and their family live an enjoyable life, the impact was likely less than for a family who did not have, for example, a social network to call upon for help, supportive teachers and school system, or financial assistance with medical expenses and caregiving if needed.

In thinking of the possibility of having a child with the genetic disorder, consider whether treatment for it is available. Bear in mind that not all medical professionals know everything there is to know about genetics, the condition, or prospects for treatment now or in the future, so you will need to be proactive and educate yourself. Care management can also vary widely. Better care can improve quality of life and lengthen life, so advocating for your child, should he or she be affected, will become a part of your life.

© Laurin Rinder

Quality of life is a very slippery concept. The same situation might seem to provide fine quality of life to one person or family, but seem to be a miserable way to live to others. Interestingly, people with a disability usually rate their quality of life as higher than onlookers do (see The Disability Paradox: High Quality of Life Against All Odds. Social Science & Medicine, Volume 48, Issue 8, Pages 977-988. G.Albrecht).

In addition to how severe the condition seems to be to you, it is important to consider how you view personal responsibility. In some communities and families, babies being born less than ‘perfect’ is simply a fact of life, something that could and does happen to anyone–an occasional side effect of the natural process of procreation which is everyone’s right. In other communities or families, human control over the environment has become so commonplace that it is assumed we can and should control just about everything. Even if you disagree with the prevailing viewpoint, it will likely be in the back of your mind. So it is a good idea to acknowledge the ideas you’ve been brought up with and decide what your own convictions are. You are the ones who will be living day-to-day with your decision to have (or not have) a child or children. If you do decide that having a family outweighs what you perceive the risk of passing on a hereditary condition to be and you do begin a family, it is wise to surround yourself with supporters of that decision. A positive attitude will be important for you, but even more so for any child born affected by the condition.

Who Is and Who Isn’t

In my earlier entry “A Precarious Balance” I observed that, “One can also question whether it is the best plan to reduce pain and suffering by denying life to those whom we expect to experience it.”

Since then I’ve discovered a marvelous little book called Choosing Children: The Ethical Dilemmas of Genetic Intervention (2006). The author, Jonathan Glover, is a philosopher/bioethicist, but don’t let that fool you. He actually clarifies issues and I hope the effect of having read his book is evident in some of what follows.

© Sychugina

Central to the question of denying life to those who might suffer is the need to really tie down who it is we are talking about. We must remember that people only come in unique models. We cannot choose between Child A with a disability and Child A without the disability. Who Child A is, genetically and as shaped by life experiences dependent upon a myriad of factors, is the only Child A that will ever exist. Yes, you could consider having Child B without the disability, but not Child A.

Consider the following situation. An acquaintance of mine sent me something that was making the rounds of cyberspace. It boiled down to the factoid that Ludwig van Beethoven was the 10th child of his parents or something like that. (He was actually the second of seven births, but it doesn’t matter.) It was supposed to show that had this poor woman (with several deaf, a couple blind, and one mentally retarded among her previous offspring) aborted this fetus, we would be without Beethoven and all his music.

But to me, it seemed to promote every woman having at least ten children. According to the scenario, had she not conceived, we would be without Beethoven. So what is our conclusion? That every woman should bear as many children as possible because at least one of them might be great? That idea actually used to be fairly common, but not, thank goodness, any longer.

For most of us, it is acceptable to limit the size of one’s family, and “deny life” to those who would experience it were we to continue bearing children as often, and for as long, as possible.

©Monkey Business Images

The point is that who is already living has nothing to do with potential, hypothetical beings. If one desires to avoid offspring with disabilities, it says nothing about our valuing the life of those who have already been brought into the world. Some persons experiencing the disorder might frame our thinking as “had we known, you would not have been born” and (not surprisingly) take that personally. But they already have been born. If they had not been, they would not be persons, so it would be impossible to mean anything about them “personally.” In other words, thinking one thing, A (that we would prefer to avoid conceiving or giving birth to a person with a disability), does not necessarily lead to a next thought, B (that we wish someone with that disorder who is alive were not alive, or that they contribute nothing to society). That might be the next thought of some people, but that does not mean that everyone who thinks A also thinks B. It does not necessarily follow. (Professor Glover discusses this in Chapter 2 of Choosing Children)

One reason individuals might choose to avoid the creation and birth of a disabled child is the fact that life is not lived in the abstract. Parents have the responsibility to care for, or provide care for, the children they do bring into the world. That will affect the parents, the new child’s siblings, the entire extended family, and of course the affected child. Just how is not known. It could be for the better, it might not be–but affect all it will, on a day-to-day, hour-to-hour basis. It is not theory; it is not philosophy; it is not principle.

But what if choosing is not allowed? Perhaps due to reproductive technology being unavailable, perhaps because of one’s moral convictions about conception. What then? I shall ponder that one next time.

A Precarious Balance

In Search of Balance

The author of The Social Costs of Genetic Welfare, Marque-Luisa Miringoff, argues that we must strike a balance between the goal of eradicating genetic diseases and respect for human dignity. Social movements of the past fifty years have stressed respect for differences and support for those with less strength or power than the perfectly healthy. Miringoff states that a single-minded focus on genetic health “narrows the range of desirable human beings, identifying the different, the diseased, or the disabled as those we wish to ‘root out’” (p. 161). The challenge is to enable the less-than-perfect to function as fully as possible in society through, for instance, universal design in buildings that eliminates barriers to the disabled, even while we seek to reduce pain and suffering through genetics and reproductive technology. There is often, of course, a difference between thinking of what is good for society and what is good for one’s own family. One can also question whether to reduce pain and suffering by denying life to those whom we expect to experience it is the best plan. There are a number of ways to reason on that which I will consider the next time I add to this blog.

One Way Of Looking At It

Some of the people I have spoken with have a sibling with a genetic disorder. They have expressed how much they value their sib and the experiences they have had with or because of their brother or sister. There is often strong loyalty to that person, disability and all. They don’t want to say or feel anything that would imply that the world or their family would have been better off without them. They therefore have conflicted feelings about preventing the birth of another affected child, even though they would have loved to be able to eliminate the health problems of their sib.

You have to admit that it could hit you pretty hard if “everyone” wants to avoid having another someone-like-you come into the world! On the other hand, many affected with a disorder say they hope their relatives are not also born with the problem.

This is related to a hot topic in the disability community. A high-profile instance is when deaf parents want a deaf child, which, if their deafness is genetically based, they could arrange through IVF (in vitro fertilization) and PGD (pre-implantation genetic diagnosis) and selecting an affected embryo for implantation.

So I think a good topic to start with is what Marque-Luisa Miringoff called The Social Cost of Genetic Welfare. Her 1991 book was probably the first I read that dealt with the social controversy surrounding, shall we say, human perfectibility? Miringoff is a sociology professor at Vassar and director of The Institute for Innovation in Social Policy. The gist of the book is to examine the changes in attitude toward the handicapped that are likely to follow the ability (of the privileged) to prevent disability. To take a common, though not technically inherited example, will we start looking even more askance at those with Down Syndrome, if we think that could have been prevented through prenatal testing and termination?

But as siblings realize, people only come in one model. That particular child could not exist apart from his or her disability—it’s a package deal. Yet, we don’t want to say a person is his or her disability. Just as none of us is his or her genome. There are many social, environmental factors at work—layers of paint upon the genetic canvas.

Any thoughts?