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!