DIFFICULT MORAL QUESTIONS
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Question 65: How should a physician advise possible carriers of genetic diseases?
I am a physician just beginning my practice as a specialist in obstetrics and gynecology. I will take a very extensive medical history from every woman who comes to me, including questions about grandparents, parents, siblings, any children she already has, and other close relatives. While not routinely obtaining a similar history from every patient’s husband, I will do that when there are infertility problems or other reasons for the man to see me professionally. These histories sometimes will indicate or lead me to suspect that any child the couple might have is more or less likely to be afflicted with some severe genetic disease.
Some physicians avoid dealing with the problem by routinely referring patients for genetic counseling. I plan not to do that, mainly because I am concerned about some of the advice patients would get from anyone to whom I could refer them. But I do have a reliable counselor whom I can consult. So, I plan to consult often and refer rarely.
Many physicians who approve of sterilization and abortion tell anyone who might be a carrier of a genetic disease to be tested. If the chances of handing it on are great, they recommend sterilization; and they have every fetus checked for defective genes and advise abortion when they think it warranted. However, I plan to practice in accord with the Church’s teachings on sterilization and abortion—and contraception too. I intend to tell everyone who comes to me where I stand, though I will explain my position, not in religious terms, but as part of a philosophy of medical practice that I believe to be both valid and appealing to many people, whether or not they have faith. This philosophy stresses preventative medicine, exercise, diet, and so on rather than merely diagnosing ailments and prescribing drugs. It also prefers cooperation with nature to the aggressive use of technique. Thus, it excludes abortion and sterilization as violent and manipulative, and favors natural family planning (NFP).232
Within this framework, what should I do when I know or suspect that a couple may pass on some severe genetic disease? Urge them to be tested, and, if the outlook is bad, try to dissuade them from having children? Should I offer tests during pregnancy to determine whether a baby will be seriously defective?
Analysis:
This question calls for the derivation of specific moral norms. The basic question is whether patients themselves should choose tests if they have reason to suspect they might transmit a severe genetic disease. If such people are considering marriage, or are already married and considering having a baby, they generally should choose tests, so as to obtain information bearing on their decision. Tests during pregnancy should never be chosen with a view to possible abortion. Tests with a view to the child’s well-being might be obligatory. Tests to end the parents’ anxiety are acceptable if they do not involve significant risk to the child, are accurate, and are not too expensive. In the preceding matters, physicians’ responsibilities correspond to those of patients, but some cases present additional problems. If a woman or couple concerned about a genetic problem are determined to have an abortion and the physician’s effort to dissuade them fails, he or she should recommend tests that might save the child’s life by excluding the feared condition. If a woman or couple are determined to get tests with a view to having or considering an abortion, and efforts to dissuade them from getting such tests fail, the physician should adopt the course of action, consistent with other moral obligations, that he or she judges offers the best chance of saving the child.
The reply could be along the following lines:
Since competent adults bear the primary responsibility for their own health and functioning, including their reproductivity, your role as a physician is to serve those who come to you by helping them fulfill their responsibility. So, a good professional relationship with your patients will involve cooperation based on shared understandings and common purposes. Therefore, the primary question is, not what you should do about these matters, but what your patients should do.233
But though you should cooperate with your patients, you will be fully responsible for all of your own actions. Since you plan to practice in accord with relevant Church teachings, as a faithful Catholic should, you rightly mean to explain your commitment to all potential patients—an instance of the openness essential for a good physician-patient relationship. That openness also is necessary to forestall misunderstandings on the part of patients who might otherwise expect you to conform to the standards of physicians who consider contraception, sterilization, and abortion to be part of good reproductive health care. Unfortunately, as you doubtless are aware, the courts might use those false standards to define your legal duties and liabilities as a physician. So, since you will not be conforming to those standards, I suggest you obtain competent legal advice to protect yourself.
You may be able to minimize your vulnerability arising from your nonconformity by not only telling those who come to you where you stand but having them read, and perhaps even sign, a carefully drafted summary of your position on matters where your standards of good practice will diverge from those the courts would be likely to use. Without anticipating the legal advice you will receive, I think such a summary probably should include a clear statement that, as a matter of principle, you will not prescribe contraceptives, do sterilizations, or perform abortions; you will give no medical advice regarding these matters and no information about their availability; and in respect to these matters you will not refer patients to others from whom they might obtain any service, advice, or information that, as a matter of principle, you will not provide personally.
I now turn to the questions you raised, which must be considered within the kind of cooperative relationship I have described. So, I will look first at the patient’s responsibilities.
Should couples with reason to suspect they might transmit some severe genetic disease to offspring undergo a test? If they are considering marriage or are already married, I think they should, assuming the test is not dangerous, too expensive, or otherwise seriously burdensome. For a couple not yet married, a test’s results would either remove a reason for concern or establish a reason, not conclusive but worthy of serious consideration, for abstaining from marriage or choosing to marry someone else. For a couple already married, negative results again would remove a reason for concern—a possibly serious deterrent from having a family—while results indicating a significant likelihood that a child would suffer from a serious disease would contribute to responsible deliberation concerning whether to engage in marital intercourse that might result in conception.
In general, married couples should be conscientious in deciding whether to have a child or another child. They should begin with a presumption in favor of doing so, because “the true practice of conjugal love and the whole meaning of the family life which results from it have this aim: that the couple be ready with stout hearts to cooperate with the love of the creator and savior, who through them will enlarge and enrich his own family day by day” (GS 50). The object of the deliberation should be to discover God’s will, and that certainly will not be that they impose unfairly on others, fail to fulfill already-existing responsibilities, or assume new responsibilities they cannot reasonably expect to fulfill. Therefore, they should take into account the many factors that might be relevant: their physical, psychological, economic, and social conditions; the good of their present and future children; the needs of their extended families, of society as a whole, and of the Church.234
In times past, some faithful Catholics thought (and a few still think) that a couple can be sure of acting in accord with God’s will by engaging in marital intercourse whenever they wish and trusting in providence. Certainly married couples should trust in providence; but God has given the Christian couple reason enlightened by faith and the power to act in accord with it (see q. 31, above). Neglecting these gifts is not pious submission to providence, even though many people misled by bad pastoral advice no doubt sincerely thought it was.235
Suppose a married couple undergo genetic testing and the results reveal a significant probability—say, one chance in four—that a child would suffer from a serious genetic disease. Should they abstain from intercourse that might be fertile? In many and perhaps in most cases, yes, for either running the risk would be unfair to others or having a child afflicted with the disease would entail responsibilities the couple either could not fulfill or would be seriously tempted to omit fulfilling. In some cases, however, the answer is no. Foreseeing no morally cogent reason to avoid having an afflicted child, they may courageously agree to accept the risk, at the same time firmly committing themselves to carry out this element of their vocation should it be part of God’s plan for them.
Many people will disagree with this position, thinking that deliberately taking a high risk of having a child afflicted with some terrible disease is plainly an injustice to the child. However, deliberately taking such a risk must not be confused with causing a similar injury to an already-existing person. The child who comes to be with an affliction would otherwise not have come to be at all. For a person, however, having come to be means living forever, with an opportunity for happiness that no affliction, however severe, can impede, lessen, or bring to an end. Thus, the child himself or herself remains a great good, and no one can rationally judge that any amount of foreseeable suffering—for the child and others involved—outweighs that good (see q. 33, above).
Again, some people will argue that taking the risk always will be unfair to those who will be burdened with the costs of special care, not least health care, not only for the child but for his or her descendants. But that is far from clear unless taking the risk is wrong on other grounds. Since much health care would be unneeded if people behaved temperately and chastely, imposing a burden by doing something otherwise morally good hardly seems unfair. Moreover, the possible benefits of the child’s life for other people should not be ignored, and the burdens should not be projected overconfidently. Those burdens might be eliminated or reduced significantly by advances in treating the disease and/or the defect that causes it, and the child will not have any descendants without future choices that should not be anticipated. And other arguments based on fairness—for example, to children the couple already have—can be answered similarly. Though duties to others no doubt often will preclude taking a high risk of having a child afflicted with a serious disease, such a child is not only burden but gift, and sometimes, all things considered, the burden is fairly accepted for the sake of the gift.
So, one cannot rule out the possibility that a couple could rightly decide that they need not abstain from possibly fertile intercourse, despite the probability that a child will be afflicted with a severe disease, genetic or other. Moreover, in the case of genetic diseases, a couple accept only more or less risk; avoiding parenthood on this basis means also forgoing children who would themselves be healthy, though perhaps carriers of the genetic defect.
What about genetic tests during pregnancy?236 Three factors must be considered: the intended purpose of such a test, its accuracy, and burdens such as risk to the child and cost. It is always wrong for the parents to seek a test with a view to aborting or even considering aborting a child found to be afflicted with a disease. On the other hand, if done with a view to treating the child or mother, or making necessary preparations to care for the child, a test, especially if very accurate, would be justified if the prospective benefit to the child warranted any risks to him or her. Trying simply to end the parents’ suspense—so that they will be freed of unnecessary anxiety if the test is negative and able to adjust to their child’s condition if it is positive would not justify a test involving significant risk to the child. But if a test were accurate and with very little risk to the child, easing parental suspense might well justify the cost. Testing merely to satisfy parental curiosity is unreasonable inasmuch as it wastes health care resources, and is unjust if all or part of the cost is covered by insurance or a public program and so passed on to others.237
If the preceding analysis correctly articulates a couple’s responsibilities, what are yours as a physician?
In general, having entered into a professional relationship with your patients, you must make your expertise available to them and you owe them candor. Therefore, if you learn something and the patient or couple could use the information for any legitimate purpose, you may not withhold it but must communicate it. At the same time, however, you should not try to replace with your advice a patient’s or couple’s own conscientious reflection about options that might be morally acceptable for them. You cannot know anyone else’s vocation and situation as a whole, and so you cannot judge and discern for others. Attempting to do so is likely to result in shaping others’ lives by your reasonable priorities for your own or even by your biases. Very often, patients or couples, confronting difficult questions, will want such inappropriate direction. Be careful not to give it, and bear in mind that your facial expression and tone of voice in talking about possibilities can convey as much as saying, “In your place, I would do such-and-such”—which often would suffice to settle an issue. If pressed for your opinion on such issues that lie beyond your professional competence, explain frankly: I cannot say what I would do if I were in your place, because my life and situation are so different from yours that I really cannot put myself in your place.
What about cases in which you have provided information and a couple must make a decision but disagree with each other? If both positions could be morally acceptable for the couple, the decision remains their responsibility and beyond your competence to make. So, you should not take sides. However, insofar as the couple’s disagreement affects your ability to cooperate with them, you ought to try to help them resolve it by acting as a nondirective mediator, helping them become conscious of and share their feelings, articulate their thoughts, and listen to each other.
What about your responsibilities in particular?
Having reasons to suspect unmarried individuals or couples may carry a severe genetic disease, you should inform them about the possible problem and offer any tests they could rightly choose. But, having explained the reasons for such tests and any adverse factors, leave the decision to them. If they decide to have tests, you should not only inform them of the results, but, if they are positive, fully explain their implications and make a serious effort to ensure that this important explanation is well understood and accepted. Whether such people should marry is not a matter within your competence as a physician, and so you should not presume to offer professional advice for or against.
You should proceed similarly in dealing with married couples, except that the practical implications of a positive test result obviously will be different. Except in cases in which pregnancy and childbirth are themselves strongly contraindicated by health considerations, physicians as such never should advise people whether to have children, because the chief goods at stake in that decision are the child and the couple’s potential fulfillment in parenthood, and these goods transcend the proper end of medical practice. However, you should help couples to foresee accurately the various burdens and hardships the disease would impose on the child, themselves, and others. More important, however, is to help couples who think they ought to avoid pregnancy learn how most effectively to practice NFP, as should be done by those who judge that they have a grave obligation, for genetic reasons or others, to avoid having a child.238
As for tests during pregnancy, always bear in mind that the unborn child is also your patient and you are responsible for his or her life and health. This responsibility might call for steps by you that otherwise would be at odds with the requirements of a sound physician-patient relationship with the child’s mother. Three broad kinds of cases must be distinguished.
In some cases, the woman or the couple raise no question about abortion. When you have reason to suspect that the child may inherit a genetic defect or disease, there is a prospect of benefiting either the child or the parent(s) or both, and there is no prospect of harm or significant risk to either, you should offer tests, making clear the limits of their accuracy and any adverse factors. But you should not go further and recommend testing unless the results are needed for some morally acceptable medical decision.
In certain other cases, fearing that the expected child will suffer from some genetic disease, a woman or couple will have decided on abortion before discussing the matter with you and will not ask about testing. If in these circumstances other efforts at persuading her or them to reconsider fail, I believe you should recommend testing that might rule out the feared condition and save the child’s life. In such a case, the woman’s or couple’s choice of testing would be with a view to possibly accepting the child, and so would not be wrong in itself, even though the test’s results, if unfavorable, would tend to confirm their previous wrongful decision to abort the child. Of course, if the test result was unfavorable, you would try to get the couple to change their minds and accept the child. If that effort failed, you would, in my judgment, be obliged to recall the basis on which you had accepted the woman as a patient, point out that you had excluded having anything to do with abortion, and terminate your professional relationship. Doing that would be your last service to the unborn child, while not doing it would be a serious failure to bear witness to the truth.
Finally, in still other cases, a couple will be interested in testing with a view to having or considering having an abortion if the test discloses a defect. In such cases, too, you will try to persuade the couple to accept the baby regardless of any defect or disease that might afflict him or her, and, unless test results will be needed for some morally acceptable medical decision, you will try to persuade the couple to forgo them. What if they insist on getting tests? Their insistence would violate the relationship they had formed with you. Still, as the unborn child’s physician, you should adopt the course of action, consistent with your other moral obligations, that you think would offer the best chance of saving the child.
I can think of two such possible courses of action, though there may be others. If you think your best chance of saving the child is to tell the parents that you cannot continue serving as the woman’s physician unless the couple change their minds, you must make that threat. Then, if the threat proves ineffective, you will have to carry it out—to bluff would be to lie, and lying is always wrong. If you think your best chance of saving the child is to agree to obtain the tests the couple insist on, you must agree to get them. The chosen means—the testing—will not be intrinsically evil, and your intended end can be to prevent the couple from receiving unfavorable test results from someone who would advise, facilitate, or do an abortion; and instead to present the results yourself and, if they are unfavorable, to take advantage of that final opportunity to try to save the child. If that effort failed, you would, in my judgment, be obliged to proceed as in other cases in which a couple are determined to obtain an abortion.
In every case, you should pray for your patients, not least for unborn children. And you should hope that God’s mercy will bring into the light and save those you tried but failed to dissuade from killing and preserve from being killed.