October 14, 2015 // Uncategorized

The Catholic Doctor: Defending those with Trisomy 21

By Dr. Ashley Fernandes

On June 16, 2015, the Ohio legislature began debate in the Ohio State House on HB 135, the Down Syndrome Non-Discrimination Act, which would ban abortions in Ohio when a diagnostic or screening test is positive for Trisomy 21.

Dr. Ashley K. Fernandes, M.D., PhD, associate professor of pediatrics and associate director of the Center for Bioethics at The Ohio State University, board member of the Catholic Medical Association and trustee the Ohio Right To Life, provided expert testimony on this bill. He will be speaking at the annual dinner in Fort Wayne on Oct. 20 at St. Mary, Mother of God Church following the White Mass at the Cathedral of the Immaculate Conception at 6 p.m. The edited transcript of his remarks before the Ohio House subcommittee follows:

Down Syndrome, or Trisomy 21, is a chromosomal disorder where an effected person has a genotype with an extra 21st chromosome, in whole or in part, and leads to a phenotypic spectrum with certain typical features such as small stature, epicanthal folds of the eyes, and usually mild developmental disabilities — although the phenotype varies widely.

Quality of life

The medical literature … supports the notion that the quality of life of families is dependent on the psychological support and social support they receive more than medical or socio-economic factors. … These are mutable, reversible factors that are dependent upon our efforts and us and do not involve killing anyone. Abortion — which takes place in more than 90 percent of those with a prenatal diagnosis of Down Syndrome — is irreversible. In short, stigma — or lack of it — is critical to women who under the current system must make these decisions. Those decisions about societal support for children with Down Syndrome will consistently be undermined if women and their doctors are allowed to make a “choice” — in absolute value — which says that such life is disposable. … It is therefore my duty, and that of any pediatrician, to create a climate of love and support for these families and their children. To show solidarity with them, to be, for what its worth in our brief visits with them, a face of love and hope. You as legislators, whom we have entrusted to codify the shared moral values of our society and state, also have that obligation.

The nature of the person and the nature of choice 

In philosophy, we call the study of the underlying view of the person “philosophical anthropology” — what are the essential characteristics of a person. … Today in this debate, there are two clearly competing philosophical views of the person.

One view is called the empiricist view. On this view, a person is simply a random collection of atoms, created by chance, with no other purpose except happiness in this life. Only what we can see, feel or touch constitutes reality. … The greatest asset we have is “choice,” because our life boils down to absolute autonomy. Freedom becomes freedom to choose, because that is all there is. When a prenatal diagnosis of Down syndrome is given, the unborn child is merely matter; feelings attached to her are epiphenomenon of matter. The primary purpose of life is to feel validated in one’s choices, and to avoid suffering or perceived suffering for oneself. … If this were the only view, the pro-choice opponents of this bill would be right.

However, there is a view that offers a deeper, richer notion of person. On this view, promulgated by a philosophy known as personalism, a person is one who has the capacity to reason, to love, to act in freedom, and to live in communion or solidarity with others. We were not placed here by chance, but by purpose. Love is our greatest, distinguishing characteristic. But not love of self alone. A human person is, by nature, relational. She must look to the other, even the smallest, most defenseless, most vulnerable other. She must see that other in herself. On this view, freedom is not merely the selfish notion of a “freedom to choose.” Rather, freedom becomes choosing the good. A person fulfills his or her nature when they make a choice for an objective, true reality outside oneself. A person fulfills her nature not through a dogma of non-interference with the preferences of another but rather when they choose love. … We must create a world in which we believe that society is created for the person, not the other way around.

Valuing the gift of life

Our goal ought to be to start with valuing the gift we have been given with these vulnerable children. We have a real chance to do this with HB 135. This is not just an issue for pregnant woman facing this diagnosis and their doctors. It is an issue that affects all of us, if we are to love those women and their unborn children, as we ought.

… A diagnosis of Down syndrome does not mean we have a life that is unworthy of life; a life so doomed that the most humane thing we can do for the mother and child is to snuff out that life. On the contrary, to learn the lessons of history is to affirm a life — for the mother, for the child herself, for the physician, for all of society — which to our imperfect eyes is called “imperfect,” but who, through these so-called imperfections perfect us and our world with unconditional love.

I end with this quote from Dr. Jerome Lejeune, the French physician and geneticist who discovered the cause of Trisomy 21: “People say, ‘The price of genetic diseases is high. If these individuals could be eliminated early on, the savings would be enormous!’ It cannot be denied that the price of these diseases is high. … But we can assign a value to that price: It is precisely what a society must pay to remain fully human.”

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