Thursday, February 16, 2017

Playing God

It’s funny how some events in the course of human history become universally understood as watershed moments and the individuals connected with them become correspondingly famous. The invention of the moveable type by Johannes Gutenberg in the middle of the fifteenth century is a good example: he’s famous, his invention is famous, and the shift from handwritten to printed books is widely understood as a true threshold in the development of world culture. You could say the same thing about James Watt’s perfection of the steam engine in 1781 or Alan Turing’s invention of the world’s first working computer, the so-called Turing Machine, in 1936. All famous men, all the well-known dates of famous events.

But other events fall away, just as do also the people connected with them. The real inventor of the moveable-type printing press, Han dynasty inventor Bi Sheng, is known to almost nobody today. Isaac Newcombe, the inventor of the steam engine that Watt was able dramatically to improve has long since been forgotten by all but historians of science. Charles Babbage, the British polymath whose 1822 “difference engine” was the forerunner of the computer, remains an obscure figure to most. My point in mentioning these three names is not to suggest that the people mentioned in the first paragraph don’t deserve their fame, which they all surely do. Rather, my point is to show how difficult it is to see these events when they are actually happening and to recognize them as momentous. Indeed, despite the fact that all three of the mostly-forgotten persons mentioned here—Bi Sheng, Isaac Newcombe, and Charles Babbage—managed materially to alter the course of human history through their work, all were eclipsed later on by the perfectors of their efforts not because the latter schemed to deny their predecessors their due but because, when the world finally got around to noticing that it was standing at a threshold moment, the people in the first paragraph were standing in the right place at the right time and not the people in the second.

Nor is it easy to notice when society has crossed a developmental line back across which it will never be able to step. And, indeed, all sorts of things that felt momentous in their day were proven later on not quite to be the breakthrough they seemed at the moment to be. I remember buying my first music CD and thinking that music would never be the same again. But that was then…and now the introduction of the music CD in 1982—for the record, a Philips recording of Claudio Arrau playing some Chopin waltzes—feels like a bridge between cassette tapes and the kind of audio files that seem to exist without physical space and which simply fly on command through the ether into the machines devised to 
play them.

And now I get to the real subject of this week’s letter: the joint announcement the other day by the National Academy of Sciences and the National Academy of Medicine that they formally approve of the effort to modify human embryos by altering the genetic code in which are embedded the traits the people those embryos will eventually become will be able to pass along to future generations. It’s hard to know what to do with such an announcement. Is this one of those pivotal moments in world history that will be remembered as a real turning point in the development of human society, as a real break with the past? Or is it just a breakthrough moment in terms of human attitudes towards a specific kind of scientific research…but not a true threshold moment in the history of humankind? That is the question I’d like to explore this week.

The academies only noted their approval with respect to certain specific kinds of research, the kinds designed to enable the deletion of genes that cause “serious diseases and disabilities.” And even that is only to be considered acceptable when there exists no reasonable alternative to eradicating the disease by altering the genetic code of those who bear it into the world.

It feels unlikely, however, that the kind of discipline necessary to keep faith with those two strictures will be maintained for long. For one thing, the terms in play—the “reasonable” in “no reasonable alternatives” or the “serious” in “serious diseases or disabilities”— are open to a very wide range of definitions. Yet, even with that caveat, there surely are diseases that all would qualify as “serious” threats to health and disabilities that no one would think twice about referencing as “serious” disadvantages to the people obliged by circumstance to deal with them. It’s hard, for example, to imagine the argument against doing whatever it takes to eradicate Huntington’s chorea, a terrible affliction that leads through horrific disability to eventual death. And if there are unfortunates who carry the genetic code for that specific disease, but from whose gametes could be created an embryo that could specifically be altered not to bear that code and therefore not to have to fear the disease and its awful consequences or to risk handing it down to future generations—it’s hard to come up with a cogent argument against helping such people rid themselves and their descendants of a horrific genetic curse.

And yet there are those who look with disfavor on this kind of research, fearing that the moral and ethical brakes they deem requisite for looking positively on this kind of research will simply not be applied by all and, indeed, the whole specter of “designer babies” is something that really should give us all pause for thought.

Due to the development of something called CRISPR-Cas9, the concept is not as far-fetched as it once was. The first part stands for Clustered Regularly Interspersed Short Palindromic Repeats. The second part, Cas-9, is CRISPR Associated Protein 9, an enzyme that somehow has the ability to act as a kind of molecular scissors capable of “cutting” a strand of DNA at a specific point in the genome so that it can be deleted or adjusted.  Come again? I’ve been reading websites all week looking for a simple explanation. No luck on that front! Still, to read the best (and, yes, the simplest) explanations I could find online, click here and here. Really, you need a background in molecular biology even to begin to get how this works, but the ethical issues do not inhere in the science and it should be more than enough for laypeople like ourselves to understand that CRISPR-Cas9 is a genome-editing tool that works well enough for scientists seriously to be on the verge of learning how to alter the genetic code of the pre-born.

From a certain vantage point, you could argue that the ethical concerns that so worry so many are being overstated. After all, we all do what we can to help our children succeed in life! We specifically do not teach our kids just to accept their weaknesses and inherent shortcomings, and to leave it at that. Instead, we do what we can to help them succeed and consider it irrelevant if their eventually performance only comes after long hours of training, practice, rehearsal, study, exercise, etc.  So why exactly shouldn’t, say, tone-deaf parents ask a scientist to alter their genetic code to include the gene for musical excellence for future generations to enjoy? Yes, of course, that sounds a bit frivolous. But the arguments against sound just a bit puritanical (and I mean that in a negative sense): if a child overcomes a natural, genetically-based disability through hard work, perseverance, and dogged tenacity and dedication, we consider it praiseworthy. But, and here we wander onto ethically thinner ice, if the means of overcoming some specific innate, inborn obstacle comes from without—from a friendly genetic engineer altering the child’s potential skill set to delete the specific traits that will hold him or her from succeeding in that very same arena—then we consider that to be unfair and morally suspect. It feels that way even to me! But more difficult, and by far, is saying exactly how those two means of assisting a child excel differ ethically.

Yes, one avenue will be available to the wealthy before it trickles down to the middle class, let alone those who live in poverty. But in a society in which the same could be said of a thousand other things—SAT prep courses, the kind of personal training that leads to athletic excellence, private music or art lessons, summers spent in camps devoted to the cultivation of the specific skills necessary to succeed, travel to distant lands to learn languages or some skill available in that specific place—it feels odd suddenly to climb up onto a high horse with respect to this specific means of helping children succeed. Don’t we specifically not care that the wealthy can provide more for their children than the poor? We certainly behave that way in most other contexts! And to tell the child of well-off parents that he or she can’t be helped to overcome some congenital inability to succeed because of his parents’ wealth also seems a bit perverse. Isn’t helping some children better than helping none?

And yet I also see the other side of the coin…and clearly. There surely is something unsettling about the notion of altering the genetic code that yields the diversity that now characterizes human society. But to oppose scientific research that could eventually assist people in ridding society of gene-based diseases and defects seems impossible to justify morally. So perhaps the real question before us is not whether the report of the National Academy of Sciences and the National Academy of Medicine is right or wrong to support the latter while strenuously arguing against using this kind of technology to improve the lot of future generations other than by ridding them of terrible diseases or defects, but something incredibly more difficult to decide: if it were to be so that this particularly genie, once out of the bottle, will be impossible to force back inside…then would the notion of ridding the world of Huntington’s or Tay-Sachs disease or beta thalassemia be worth the risk of scientists, both at home and abroad, crossing the line to create people who are better than they might otherwise be in other ways as well?

To condemn the possibility of altering the genetic make-up of embryos as “playing God” requires having a clear sense in mind of what that thought even means.  Every significant medical break-through has altered the world God made in a profound way that could reasonably be qualified as unnatural. Yet none of us regrets the eradication of smallpox or would dream of arguing that Edward Jenner was “playing God” in 1798 when he developed the world’s first effective vaccine for any disease at all. But wasn’t he doing just that?

It seems to me that we are crossing a huge threshold with the report of this last week endorsing the kind of research into the alteration of the genome that we both eagerly await and reasonably fear. Is it worth going forward and merely hoping for the best? Should we shove this particular genie back in the bottle and throw it into the sea?  If you want a clear answer, ask a potential parent who carries the Huntington’s chorea gene!

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