The Promise and Peril of Genetic Screening
The Catholic bishops of the United States believe that, despite occasional tensions and disagreements, there can be no irreconcilable conflict between religion and science.
This statement is the third in a series designed to show how science and religion can offer complementary insights on complex topics like the emerging biotechnologies. It is offered to people of science and of faith, indeed, to all those concerned with the moral implications of humanity’s new knowledge and power.
National Conference of Catholic Bishops
Committee on Science and Human Values
When patients exhibit symptoms of an illness that has a hereditary component, or there is family history of such illness, the doctor may order a genetic test on them or their relatives. When large numbers of people, even a whole population, seek information on their genome, or when an agency like government or business seeks it, a genetic screen is required. If one is a probe to find a particular flaw, the other is a search for all flaws of a certain kind.
Increasingly, genetic screening is part of the normal practice of medicine. For example, in most states all newborns are routinely screened for PKU, a genetic defect that causes severe mental retardation but whose effects are controllable by diet. Children can be screened for neural tube defects before birth. Screens are now available for relatively common ailments that affect one’s offspring, like cystic fibrosis, Tay-Sachs disease, and sickle-cell anemia. Finally, the 1996 discovery of what causes the mutation responsible for hemochromatosis, a very serious but easily treatable disorder of the blood, may lead to the first adult genetic screen, also a possibility for cancers of the colon and breast.
The principal medical justification for screening is as a tool for finding the incidence of disease in a population, thus opening the door to prevention or therapy. Such screening will become more widespread, as it should, since it has the potential to extend many lives and prevent much suffering. Knowledge of genetic defects responsible for disease allows science to conduct a directed search for cures; screens can then reveal who needs treatment.
Catholics have served the sick for many centuries; in fact, the Church is one of the major providers of health care in the world. Naturally, the Church applauds every medical advance that promises healing without violating moral law, and genetic screening is no exception. The power of screening extends well beyond medicine, however. It could prove a serious threat to individual and social morality if used imprudently.
Screens often provide information that can affect important decisions. Those who know they carry the gene for cystic fibrosis can avoid marrying another carrier, since each of their children will have a 25 percent chance of developing the disease. Couples may discover they are not carriers and go on to have children they might have avoided conceiving through appropriate means. Or, parents may seek prenatal diagnosis in order to prepare for the birth of an affected child.
Unfortunately, such information can also tempt people toward decisions the Church recognizes as objectively wrong. The link between genetic testing and selective abortion† could be even stronger with genetic screening, if only because screening affects large numbers of people, not just individuals. Whether screens are eventually developed to detect gender or a handicapping condition or an illness like Huntington Disease that manifests itself late in life, abortion is never a morally acceptable response. Rather, it is a raw and lethal assertion of one human being’s power over another.
Experience suggests that widespread use of screening could raise abortion, or other violations of human dignity like forced sterilization, to the level of social tools. Many who are eager to control global population already accept both procedures as legitimate means to achieve their end. Genetic screens could allow misguided governments to employ abortion and sterilization not only to control the number of their citizens, but also to prevent the birth of people who might become a welfare “burden.”
Carried to an extreme, screening could help shape a nightmarish future, because it confers precise ability to draw distinctions among people based on their genetic makeup. The history of Germany’s Third Reich is not the only warning we have that authoritarian regimes, driven by pragmatism, rationalism, utopianism, or a lingering social Darwinism, could adopt eugenic policies in a perverse effort to “improve the human stock.” A fair reading of history reveals a spotty record in tolerating our differences.
The logic of discrimination is inexorable. Once a society defines any group as lacking basic rights, as the United States once did with African Americans and other nations have done with female babies, every group becomes a potential victim. The dignity of the human person is fundamental both to Catholic social teaching and to the democratic principle of equality before the law. Absent this standard, the norm becomes whatever a given society happens to prize or authority can enforce. Could America eventually accept screening for traits like intelligence, economic potential, or physical beauty? Only an unwavering commitment to human dignity can ensure that this remains science fiction.
Whatever the future may hold, some problems are present and real. Commercial interests are increasingly offering screens for sale, since the market is potentially huge; for example, all women could be screened for the BRCA1 and -2 (breast cancer) mutations. However, effective treatment exists for only a few of the 1,400 heredity-influenced diseases science has identified, so a positive result could be devastating. Knowing that one has a predisposition to cancer, or is at serious risk of developing early-onset heart disease, can have very serious psychological consequences. Moreover, information about one’s genome is also information about one’s relatives. If a woman carries a predisposing breast cancer mutation, there is a 50 percent chance that one or more of her sisters do as well. Her relationship with them will be affected whether she shares what she knows or not.
This example raises a basic question: who has a right to genetic information about individuals? Because diseases like cystic fibrosis, sickle-cell disease, or breast cancer are quite costly to treat and can shorten life expectancy, health and life insurance companies, government welfare agencies, and employers have an interest in identifying people who have them or are carriers for them. It is likely, then, that screens will proliferate; some may even become mandatory. Within ten years, society may well have the capacity to construct a sizeable database containing a wide range of reliable genomic information on all citizens. The existence of such a database threatens privacy and creates a serious potential for such abuses as the systematic denial of insurance. Confidentiality is essential, if not to protect us from one another, then to protect us from the sometimes hard-edged systems we have created.
The Church will not be a mere spectator as this technology matures. Genetic screening will open up a range of choices that never existed before, many of them matters of conscience. The Church must be ready to help people apply such permanently valid principles as respect for life, respect for human dignity, promotion of the common good, and love of neighbor as they strive to live Christian lives.
How can the Church share a clear and realistic moral vision? Schools can teach the moral issues human genetics raises. Sacramental preparation programs, especially those for marriage and baptism, can address the dilemmas couples will increasingly face. Catholic organizations, including the bishops’ state and national structures, can advocate for legislation and regulation carefully designed to encourage sound use of screening and to counter abuses.
Finally, the very substantial Catholic health care system, perhaps in partnership with colleges and universities, can make a special contribution—training genetic counselors, who are currently in short supply. Those who must make difficult, often agonizing, decisions will benefit greatly from the assistance of a counselor steeped in the Catholic tradition, especially the Church’s moral teachings. While counseling should never be coercive, it is inevitably value-laden. With great goodwill, the Church can offer its moral vision as one such system of values.
The promise of genetic screening is that it will help overcome some human suffering. Its peril lies in the temptation to mold human life according to a notion of “normalcy” that must always be leaden and contrived. “Choose life,” says Scripture. Choose it as one selects a flower, to understand and admire in its mystery and with its flaws. Science has shown that we all carry misspellings in our genetic code; we are all mutants. But God created us in his image, and Christ, embracing his cross, loves us in our irreducible imperfection. We would do well to employ genetic screening in this wise and humble spirit.
Also of Interest
Science and the Catholic Church
The first in a series designed to show how science and religion can offer complementary insights on complex topics like the emerging biotechnologies. The series is offered to people of science and of faith, to all those concerned with the moral implications of humanity’s new knowl-edge and power. From the U.S. bishops’ Committee on Science and Human Values.
No. 085-0, brochure
Critical Decisions: Genetic Testing and Its Implications
The second in the Science and the Catholic Church series, this statement addresses the moral issues raised by the emerging biotechnologies and stresses the Church’s responsibility “not only to inform consciences and assist in the formation of wise public policy, but also to keep tradition vital.” From the U.S. bishops’ Committee on Science and Human Values.
No. 5-112, brochure
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Publication No. 5-076
United States Catholic Conference
Washington, D.C.
ISBN 1-57455-076-4
Copyright © 1996, United States Catholic Conference, Inc., Washington, D.C. All rights reserved. This work may not be reproduced or transmitted in whole or in part by any means, electronic or mechanical, including photocopying, or by any information storage and retrieval system without the express written permission of the copyright owner.
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Committee on Science & Human Values
United States Conference of Catholic Bishops
3211 4th Street, N.E., Washington, DC 20017-1194 (202) 541-3000