Accepting “the Given”

Jill Burkemper | Jun 7, 2015 | 8 cmts

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.