Faith, genetics and life decisions collide again

If you could know ahead of time from what medical conditions and at what age your child — even as an adult — would be likely to die, would you want to know?

Would you want to know that information about other family members or about yourself?

A revolutionary new test developed by scientists at King’s College in London might be able to uncover that information with a simple blood draw. The test, which was published in the July issue of the International Journal of Epidemiology, provides scientists with a “chemical fingerprint” that identifies 22 metabolites, or molecules linked to metabolism, that may indicate how a person will grow old.

One of the metabolites in particular seems linked to a range of traits such as lung function, bone density, blood pressure and cholesterol levels. It also is strongly associated with birth weight, which itself is a known factor in healthy aging.

Slippery slope?

Experts point out that such testing can help doctors circumvent the devastation of disease in old age and could lead to innovative treatments for age-related conditions, like bone problems and heart disease.

They say it also paves the way for a greater understanding of the correlation between and consequences of poor nutrition during pregnancy and lower birth weight.

Such information can indeed be useful for treating disease and improving a person’s quality of life. But it also could backfire. If such testing were to become commonplace, it could lead to speculation about a person’s medical future, which could affect life decisions and even lead to abortion or euthanasia.

The newly developed metabolite testing brings up issues similar to prenatal testing already used to assess a child’s health in utero. Knowing what conditions a child has in the womb can help parents and doctors determine the best way to care for the baby both before and after birth.

For example, there is a rare, life-threatening disease called Krabbe’s leukodystrophy that affects the myelin sheath of the nervous system and can be successfully treated with a bone marrow transplant just after birth. If the disease is diagnosed with prenatal testing, the parents can search for a matching donor before the child is born, assuring the fastest and most effective treatment possible. Spina bifida, a congenital disorder in which the embryonic neural tube is not fully encased, can be treated with microsurgery on the baby while still in utero.

Contrary thinking

Father Tad Pacholczyk, ethicist and director of education for the National Catholic Bioethics Center, is well-versed in the topics of genetic and prenatal testing, including eugenics, or the study of hereditary traits and their impact on the quality of life. He cautions couples considering such testing for their children because it could drag them into a mentality that is contrary to Catholic teaching.

“While prenatal testing may seem to give couples more power, it often actually takes choices away. Society’s demand for physical perfection places enormous pressure on couples to ‘conform to the norm’ by aborting less-than-perfect children. When medical professionals advocate prenatal testing, the profession subtly communicates a message that there may be certain lives that are not worth living. This quiet ‘conspiracy of eugenics’ is beginning to reach to all levels of society, affecting even Catholics and others of a strongly pro-life persuasion,” he said.

Father Pacholczyk offers similar advice in regard to metabolite testing.

“Chemical ‘fingerprinting’ by looking at metabolites to assess possible future disease states in, for example, a newborn or a young child, could also be used in a morally praiseworthy way, to prepare treatments for the individual in advance, to take steps to limit the severity of symptoms by early intervention, and to help such individuals come to a more serene acceptance of what may lie ahead. If it were used in a discriminatory way, however, as in the case of denying or inappropriately limiting insurance coverage, this would clearly raise significant moral concerns,” he said.

The Church’s stance

In 1996, the U.S. Conference of Catholic Bishops issued a document called, “Critical Decisions: Genetic Testing and Its Implications,”which states the Church’s stance on the issue. Such tests, it says, are permissible “when they do not involve disproportionate risks for the child and the mother, and are meant to make possible early therapy or even to favor a serene and informed acceptance of the child not yet born.”

The USCCB’s document quotes Blessed John Paul II in an address to the Pontifical Academy for Life in November 1995:

“Indeed, the biomedical sciences are currently experiencing a period of rapid and marvelous growth, especially with regard to new discoveries in the areas of genetics.... But if scientific research is to be directed toward respect for personal dignity and support of human life, its scientific validity according to the rules of each discipline is not enough. It must also qualify positively from the ethical point of view, and this presupposes that from the outset it endeavors to promote the true good of human beings as individuals and as a community. This happens when efforts are made to eliminate the causes of disease by putting real prevention into practice, or whenever more effective therapies are sought for the treatment of serious illnesses.”

Temptation

The Church’s teaching on eugenics is meant to protect more than our morality; it also is meant to protect our faith. If tests such as the metabolite one came into practice, it could do a lot of good in terms of diagnosis and medical treatment. On the other hand, believing that we “know” what conditions we will have later in life and at what age we’re likely to die could impact our confidence in divine providence and our relationship with God. The temptation would be to plot out our lives ahead of time based on eugenic information rather than dependency on God’s grace and discernment of his will for us.

Dr. Dan Kuebler is a professor of biology at Franciscan University at Steubenville. He’s also the parent of six children, ages 3 to 13. As a scientist, Dr. Kuebler sees tremendous potential for genetic and metabolite testing. He agrees with Father Pacholczyk that such information can be invaluable in diagnosis and treatment, although he’s skeptical that metabolite tests like those discussed in the King’s College study will be readily available anytime soon.

“If we’re giving vague information, that can become problematic,” he observed. “If we tell someone he’s more likely to have heart disease than somebody else, then that could stress him out and cause more harm than good. He might be more likely, but then again he may never have it. If there was a way to say, ‘you’re going to die on this day of this disease,’ I think it would take away from the gift of life, of what it is, and appreciation of it day in and day out. That knowledge could cause your life to be totally different from what it would be otherwise.”

Tough decisions

As a parent, Dr. Kuebler would want to know information about this child’s current and future health, but again, only if it were meant to provide helpful intervention and/or treatment, if it would help him to prepare to be a better parent to that child, and if the testing involved did not put the child or mother at risk, as the Church teaches.

“The problem is, that’s not what these tests are usually being used for,” he added.

Leticia Velasquez, a mother of three daughters who is the editor of “A Special Mother is Born” (WestBow Press, $17.96) and co-founder of KIDS (Keep Infants with Down syndrome), would refuse such testing if offered to her for her child. In fact, she already did refuse prenatal testing when she was pregnant with her daughter, now 11 years old.

Velasquez’s daughter has Down syndrome, which was suspected while she was still pregnant. She told her doctor that there was nothing he could tell her about her child that would change her mind about giving her life.

“By rejecting prenatal testing, you are opening yourself to allowing God to surprise you with a special needs child,” she said.

The parents — 34 of them — that Velasquez interviewed for her book all said that they were blessed by parenting their special needs children, learning from them the virtues of hope, patience, perseverance, joy, charity and self-sacrifice.

“When you think about it,” she said, “none of us knows if our healthy children will become tragically ill, or an aged relative will fail, or we will lose our health in an accident. We all will face infirmity; we need to trust God that despite the temptation to escape, walking the Calvary road with our loved one is where we find Christ’s peace and a strength which could only come from him.” 

Marge Fenelon writes from Wisconsin.