The Personalist Project

Devra’s posting (here) about rejecting “the given” brought to mind questions I’ve had in learning a bit about possible treatments for genetic disorders and recent developments in genetic alteration methods.

The Jerome Lejeune Foundation is (was?) hopeful that a drug can be developed that will increase the intellectual capacity of persons with Down Syndrome. The drug would be manufactured from a family of molecules known to be effective in inhibiting the enzymes produced by the gene cystathionine beta synthase (CBS) which is located on the 21st chromosome. Overexpression of CBS (occuring in persons with an extra 21st chromosome) is known to cause intellectual disability.

If I am a person with Down Syndrome, would I be inappropriately refusing to accept who I am by taking drugs that interfere with the expression of my genetic make-up? My guess is no. (The drug wouldn’t really change my fundamental genetic make-up but rather the ability of my genetic make-up to express certain limitations.) However, it’s not clear to me how to draw the line between 1) seeking appropriate treatment for my limitations and 2) failing to accept my “God-ordained” identity.

In his 1983 address to the World Association of Medicine, John Paul II states,

A strictly therapeutic intervention whose explicit objective is the healing of various maladies such as those stemming from deficiencies of chromosomes will, in principle, be considered desirable, provided it is directed to the true promotion of the personal well being of man and does not infringe on his integrity or worsen his conditions of life.

On the other hand (though referring here to “the case of not strictly therapeutic interventions”), he states,

The biological nature of each person is untouchable in the sense that it is constitutive of the personal identity of the individual throughout the whole course of his history. Each human person, in his absolutely unique singularly, is constituted not only by his spirit, but by his body as well. Thus, in the body and through the body, one touches the person himself in his concrete reality. To respect the dignity of man consequently amounts to safeguarding this identity of the man "corpore et anima unus”, as Vatican Council II says (const. Gaudium et Spes, n. 14, par. I).

In safeguarding my identity as given by my body, to what extent may I change the way my body expresses itself?

Recently attending a dissertation defense on genetic alterations, I learned about the recent discovery and use of CRISPR, enabling scientists to “induce the cell to fill in any desired sequence, from a small mutation to a whole new gene.” As stated by the Proceedings of the National Academy of Sciences,

Genetic engineers had already designed similar systems to snip DNA at any desired location, but they required scientists to assemble a protein to home in on every new target sequence, a tedious process. “Then along came CRISPR and, boom! You can just order an oligo[nucleotide] and make any change in the genome you wish,” says Dan Voytas, director of the Center for Genome Engineering at the University of Minnesota in Minneapolis, who developed one of the protein-based systems.

My impression is that our society will soon face increasing opportunities to alter our genetic make-up (including alterations that could happen in the womb or after birth). We need quickly to discern and articulate guidelines informed by an authentic personalism regarding which alterations are appropriate. And we need our personalist convictions to inform the manner in which we communicate appropriate guidelines to others. (God, help us!)

By the way, I mentioned to the author of the dissertation how I’ve wondered how to discern lines between alterations consistent with accepting each person (including ourselves) for who that person fundamentally is (is created to be)--with whatever limitations that might entail--and alterations aimed at rejecting a person's "God-ordained" identity. His response was, “I wonder if we even have a God-ordained identity.  We all have different tendencies and inclinations but I find that our ability to choose allows us to change our habits and inclinations if we want to.  That's what developing virtue is all about.” I’m unsatisfied. Surely our freedom does not imply we have no fundamental, unique identity.

Comments (8)

Katie van Schaijik

#1, Jun 8, 2015 7:44am

Jill, thank you so much for this, even though, in some ways I am tempted to hide under my blankets when this sort of thing comes up, hoping it goes away.

I don't have the scientific background to offer an intelligent contribution to the discussion. I can only feel the incredible complexity and difficulty of the problem. The comment the doctoral candidate made shows what we're up against.

And the JP II quotes fill me again with admiration over his courageous receptivity. He goes with his deep faithand understanding right up to the cultural and scientific frontiers, and brings the gospel there.

We have to learn to do that too.

Jules van Schaijik

#2, Jun 8, 2015 11:58am

Jill, what about distinguishing between "healing" and "enhancing" the human person and then drawing the line there?

The object of healing is to restore someone to good health and enable him to function normally. A healer interferes only in case of a privation, i.e. when a due good is lacking. The object of enhancement, by contrast, is to alter a person according to some desire or preference. It does not accept human nature as a norm or goal, but only as a start.

This line between healing/therapy and enhancement will no doubt be difficult to draw in certain concrete cases, but it seems reasonably clear in principle.

In your post you use the phrase "appropriate treatment for my limitations." I think that phrase is ambiguous because of the term "limitations". Some limitations are part of being human—sex, number of limbs, lack of x-ray vision, etc.—and treatment for them is never appropriate.

Jules van Schaijik

#3, Jun 8, 2015 12:12pm

By the way, I was struck the other day, reading Evangelium Vitae, that John Paul II warns not only against the error of treating (human) nature as mere raw material to be manipulated at will, but also against the "opposite error"

as in ideologies which consider it unlawful to interfere in any way with nature, practically "divinizing" it. (§22)

Jill Burkemper

#4, Jun 9, 2015 6:18pm

In response to Jules I agree there is a significant distinction between 1) using medicine to heal (restore a bodily privation) or to prevent illness (prevent a bodily privation—as vaccines prevent illness), and 2) using it to make a person better than well. (In the context of genetic alteration there are several thinkers—not without their critics—who draw lines between “genetic therapy” and “genetic enhancement.”) The challenge is in determining what counts as “better than well.” Should the standard of health be the human body as we think of it before the Fall (physically attractive, athletically capable, highly intelligent, without any genetic propensities toward sickness, obesity, myopia, depression, attention deficits, etc.)—or should the standard be lower? In any case, this question doesn’t get to the heart of my original question.

Assume we rightly understand and agree upon goods that the human body should have. What I wonder is this: If the only way to set my body free from privations of human nature is to change the fundamental building blocks of my body, is it ethically appropriate to make such a change? How much removing and replacing of my genes is legitimate? Assuming the risk of harm were minimal, would it be acceptable to make vast alterations in my genetic make-up as long as the alterations aimed at freeing me from privations of human nature? Might I rather have a duty to safeguard (at least at some level) the set of genes I was given at conception?

(By the way, Ronald Michael Green's Babies by Design: The Ethics of Genetic Choice (2007) makes an interesting attempt at defending and promoting genetic enhancements. I profoundly disagree with the book, but recommend it for presenting arguments we need to be ready to answer.)

Jules van Schaijik

#5, Jun 9, 2015 7:54pm

Thanks Jill. But I'm not sure I follow your point.

I take it that any kind of genetic manipulation is in some sense changing "the fundamental building blocks of my body." The question is when this is ethically legitimate. To that questions my initial answer (the one I gave above) would be that it depends on whether or not the manipulation is meant to heal or enhance our humanity. The former seems okay in principle but that latter does not. I expect that answer to be incomplete and even partly wrong.  But why does it not get to the heart of the matter? Do you mean something else with "fundamental building blocks"?

Jules van Schaijik

#6, Jun 9, 2015 7:58pm

P.S. Green's book looks very interesting, and the question he raises pressing. Unfortunately it will be a while before I have time to read it. :-(

Jill Burkemper

#7, Jun 10, 2015 11:01am

I’m really sorry to have been unclear. I’ll try again to express my key question:  Imagine a world in which genetic alterations of persons are safe, effective, economical, etc.  In such a world is it true that whether or not an alteration of my body is legitimate depends only upon whether or not the manipulation frees me from abnormalities we consider opposed to the ideal healthy body? Do we have just as much a right to tamper with a person’s genetic make-up as we do to medically manage the effects of a person’s genetic make-up?

The answer may indeed be “yes,” but I don’t yet see it that way. I’ve assumed (rightly or wrongly) that God wills each person to have the genetic make-up each has. “I am fearfully and wonderfully made” and shouldn’t try to change my body’s blueprint, received at conception.  I have a friend who works hard to cope with (and daily takes medicine to treat) a genetically inherited mental disorder.  When I mentioned to her the possibility of genetic alterations, her immediate response was, “That’s playing God. I believe each person is supposed to play with the cards he or she has been dealt.” Is there any truth in this perspective on each person’s unique set of genes?

Jules van Schaijik

#8, Jun 10, 2015 11:37am

It's true that there is the danger of "playing God". But there's also the opposite danger of refusing a certain dominion over nature, including ourselves. Medicine in general seems to me a kind of human cooperation with God. When someone is born with a cleft palate we rightly try to correct that with surgery. I don't see why correcting a genetic defect is any different.

After the quote from Evangelium Vitae I mentioned above, about the error of "divinizing nature", John Paul II says that it is based on "a misunderstanding of nature's dependence on the plan of the Creator." It seems to me that that plan includes human efforts to heal the sick.

But I may be overlooking something. Tinkering on the genetic level certainly raises all sorts of new questions, of most of which I am probably not yet aware.

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