I recently heard and read about some potentially groundbreaking medical news. The basic gist of the news is that researchers at the University of Massachusetts medical school have found a way to essentially turn off the genetic material which causes the set of physical and mental conditions known collectively as Down’s syndrome. The pre-implantation procedure has the potential to provide a pathway for preventing some of the physical and mental complications of the condition. There is also the possibility of eliminating the condition entirely.
Consider that. On the one hand, this seems like an entirely laudable goal. After all, what could be more noble than eliminating a genetic condition that has presented innumerable families with a heart-wrenching, life-altering set of challenges? On the other hand, when we find ourselves in a place where we are able to tinker with the very building blocks of human life, it is time for the scientists to slow down and the ethicists to speak up. Let us briefly consider why.
Jonathan Waits
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First, there is currently a range of prenatal diagnostic testing to determine in utero if a child has Down’s syndrome. The simplest and most common involves only an ultrasound. From here the tests become more invasive and carry higher risks to the baby. While such knowledge can allow parents to plan for the necessary life changes and mentally prepare themselves for the challenges ahead of them (full disclosure: my wife and I have refused this particular test twice and will refuse it a third time in a few weeks), there are a couple of problems here. The first is that the tests are not fool-proof. In particular, the ultrasound test is only about 75 percent accurate. This means a number of parents have been given an incorrect diagnosis. Here’s the second problem: by some estimates, up to 90 percent of babies diagnosed with Down’s syndrome are aborted. If this were a condition more protected by the forces of political correctness this would be loudly (and rightly) decried as a form of genocide.
In case you were not keeping score, the pairing of those facts means that not a few parents have aborted a perfectly healthy baby on the basis of a less-than-totally-certain diagnosis. Now, perhaps all of these parents made such a choice purely on the basis of preventing their child from suffering. All good parents seek to prevent their child from suffering. Yet I will need to be excused for a bit of skepticism on my part. Surely these couples are hurting and are deserving of the care and concern of the church, but they have made a tragic choice on the basis of a poor theology of suffering and a truncated understanding of what counts as a meaningful life. I suspect these two theological lapses are far more common than we would like to think.
This leads to a second facet to consider. Given this broad paucity of sound theology, wisdom would suggest that we have some ethical ground to clear up before plunging ahead blindly with this breakthrough. For example, what exactly is being cured? The accompanying heart defects and shortened lifespan? Overlooking potentially questionable methods, that seems an ethically positive improvement of quality of life. But what about the cognitive effects? These provide challenges, sometimes significant, to the families of individuals with Down’s syndrome who love them as they are while no doubt desiring deeply to see them more self sufficient. Yet does this represent a knock to quality of life?
I suppose that depends on a person’s understanding of what renders a life of good quality. From the perspective of a solidly biblical theology it would seem that a positive quality of life is defined by a person’s ability to realize the fullness of their God-given potential — whatever that potential happens to be — and to faithfully advance God’s kingdom. Running at least on a wealth of anecdotal evidence, this is fully available to those individuals affected by Down’s syndrome who seem more disposed to faith than most and who seem to receive a double helping of joyfulness as a part of their personality. This often leads to their vastly improving the quality of life of the people around them. What if a “cure” robbed them, and us, of this?
In order to consider the full weight of my point here, imagine a scenario where the ability to suppress undesirable genetic material has become standard medical practice. Imagine further that a specific gene is discovered to cause homosexuality, a gene which could now be suppressed, leading to the eradication of homosexuality. In spite of current cultural and political popularity, I would wager that most parents still do not wish such a situation for their children and would pursue such a “cure” if given the chance. In this light (and there are some assumptions built into this scenario which I do not actually hold) the moral and ethical issues become much sharper. I suspect the same voices who will soon be advocating loudly for this new Down’s syndrome cure would affect an immediate reversal of their stance if the focus of the cure were changed.
What then is the point here? The point is that as the church we need to be vigorously advocating for ethical caution at the forefront of modern medical technology and scientific breakthroughs. We need to make certain that a deep understanding of and commitment to the inestimable value of each individual creation in God’s glorious image is in the driver’s seat and not the false but popular ethic of “if we can do it, we should.” Only when we see ourselves in the light of who God is and recognize that like Paul’s “thorn in the flesh” he intentionally leaves some effects of the Fall in place to teach us dependency will we be able to move ahead on solid ethical ground in matters like these. Such an effort is part of the mission of the church and one on which we need to get to work.
Jonathan Waits (pastorjwaits @gmail.com) is pastor of Central Baptist Church in Church Road, Va.