Pediatric Annals

Ethical Issues in Screening for Unusual Child-Rearing Practices

Howard Brody; Betty Gaiss, OP

Abstract

Because of the many ethical questions that anse in any program for early identification and prevention of unusual child-rearing practices, Dr. Heifer asked the group on medical ethics at Michigan State University to comment on his article. Their critique is included below. The issues that are raised must be given every consideration as we move forward in our endeavors to help these children and their families.

Abstract

Because of the many ethical questions that anse in any program for early identification and prevention of unusual child-rearing practices, Dr. Heifer asked the group on medical ethics at Michigan State University to comment on his article. Their critique is included below. The issues that are raised must be given every consideration as we move forward in our endeavors to help these children and their families.

Since child abuse causes a staggering amount of injury and death each year, and less severe forms of abnormal parent-child interactions add to the toll of human misery, the beneficial results that would be gained from an effective detection and prevention program are clear. On the other hand, a screening and intervention program such as that urged by Dr. Heifer raises a number of significant ethical issues. Two questions are basic. First, do these ethical issues pose an insurmountable obstacle to such a program? Second, if not, how can the ethical problems encountered be minimized? In this brief discussion, only the major issues will be listed; a few of these will be discussed.

Attention should be given to the problems associated with the term "unusual rearing practices." Parents who intentionally use bilingual conversation in the home so that the child will learn a foreign language at an early age are "unusual," but this child-rearing practice may in no way be pathogenic. We will assume that a definition of "unusual" can be given to suit Dr. Heifer's intent.

Dr. Heifer's advocacy of a screening and intervention program depends on two assumptions: first, that a high degree of correlation between observational methods and/or testing instruments and the actual characteristics that determine a parent to be "high risk" can be developed through research; second, that it is possible to design and implement a parenting-skills training program that allows parents to identify their own values and to raise their children according to these values. If prediction methods are not valid and reliable and if training programs are not flexible and individually developed, the ethical problems increase tremendously. In order to get to what we see as other major issues, we will assume that Dr. Heifer is correct in his optimism on these two points.

The remaining ethical issues can then be outlined as follows:

1. A balance must be achieved between the rights of all parties concerned, including the child, the parents, and the society at large.

2. Major distinctions must be observed between after-the-fact and before-the-fact intervention, as well as between services to a patient who comes to a health worker and mass public distribution of services. What is appropriate in one case may not be appropriate in the other.

3. Both parts of the program - i.e., the screening for and the training of '''high risk" parents - must be designated as mandatory ("routine") or as voluntary, and the inherent problems with each taken into consideration.

4. For any voluntary part of the program, a proper mode of consent and guarantees, including disclosure of all necessary information about the nature of the program, must be designed.

5. Elements of the program that might have a coercive influence on parents must be identified and minimized.

6. Since a few parents inevitably will be mistakenly labeled "high risk" through false-positive test results, the emotional effects of such labeling must be minimized.

A number of models seem to suggest the validity of screening for abnormal tendencies in parent-child interaction. Whether these programs are voluntary or mandatory is another issue. The analogy with community genetic screening programs is appropriate. Many have recommended that such programs be voluntary whenever possible.1 On the other hand, many states require routine screening of newborns for phenylketonuria. Serious criticism has developed in the case of XYYchromosome screening, where routine testing of newborns was done to detect a trait thought to be related to later abnormal behavior.2 In some screening programs, including the one under discussion, those who are most at risk may be the last to admit the need for assistance. In these situations, a voluntary screening program might have a low yield.

An analogy that seems to favor a mandatory screening program is the routine testing of all patients admitted to hospitals for venereal disease. While individual patients might refuse if consent were required, it is generally assumed that the publichealth benefits outweigh the minor loss of personal rights. Even granting this, it may not be applicable to the child -rearing case. First, while "high risk" traits in the parents will affect another party (i.e., the child), such traits are not comparable with communicable diseases in posing a direct threat to the public welfare. Second, the option of carrying out tests on a routine basis without individual consent is not an inherent right of the medical profession but a privilege that may be exercised only as long as society raises no objection.

If a patient goes to a physician because of a backache and the physician detects high blood pressure and begins treating the patient for this condition, he is praised for practicing good preventive medicine. Most of us, given the choice as patients, would prefer this comprehensive approach to one that simply treated the backache and looked no further. The reaction of most people might be different if the physician proposed to test for and treat not something that is universally recognized as a disease but, rather, something that has been considered outside the area of medical concern. Society jealously guards how one chooses to raise one's children as part of one's personal life. The ethical problem is compounded if the physician, not content to test patients who voluntarily come to his office, goes out into the streets to test the public at large.3 At issue is whether the doctor is treating disease or is imposing "treatment" that is regarded as violating personal freedoms.

Still, a mandatory screening and intervention program would be justified if concern over the rights of parents were overridden by the need to protect more essential rights of the child. Certainly one such right is the right to be free from physical harm; once such harm is documented by abuse or neglect, a court may take custody of the child away from the parents. If a test could be developed to accurately predict abuse or neglect specifically, instead of the entire spectrum of "unusual child-rearing practices," preventive intervention to protect the child would be justified on similar grounds; but Dr. Heifer cites the apparent impossibility of developing such a test.

Can one reasonably suppose that there is a similar right of the child to be free from psychologic harm, which would in turn justify a mandatory screening program for "unusual child-rearing practices" across the board? Certain deleterious psychologic environments can be as destructive to the individual as some types of physical abuse. The problem of deciding what is to be classified as "psychologic harm" is very difficult. There are actually two problems here. "Experts" may be able to formulate clear and easily applicable criteria for such "harm," but the public at large might refuse to accept these criteria. On the other hand, there might be criteria that meet with wide popular acceptance but turn out, upon careful analysis, to have no rational basis. Where either or both of these sources of disagreement are present, trying to justify a mandatory screening program on the basis of a posited "right to be free from psychologic harm" raises more ethical issues than it solves. To take what might seem an extreme example, some would insist that television news be censored to eliminate any content that could be "psychologically harmful" to children.

For these reasons, one might come to the same conclusion about mandatory screening for "unusual childrearing practices" that others have arrived at with regard to genetic screening - that the increased yield of positive test results is not worth the infringement on individual liberties and, as a consequence, the erosion of public trust in the health professionals involved. This suggests that every attempt, such as community education programs, that can be used to increase the yield of a voluntary program ought to be considered before a mandatory program is implemented.

Similar concerns would move one to opt for a voluntary intervention component of the program. Intervention consists of training in parenting skills. An additional concern is that parents will find it hard to develop optimal learning motivation if they are pressured to attend the classes.

For any program to have the appropriate personal safeguards, informed consent ought to be obtained from participants; Dr. Heifer's consent form, which is intended for research purposes, is inadequate for fully implemented program. Adequate disclosure of information should include the aims of the program and the provision that if parents show "high risk" scores on screening there will be follow-up contact to encourage them to accept the training program. Parents should also be informed of the possibility of false-positive or false-negative test results if these risks are known. The psychologic harm to parents who, because of testing errors, are incorrectly labeled "high risk" is a major negative factor that may never be completely eliminated; it can be lessened, to a degree, by keeping the screening and training programs as free from moralistic overtones as possible and by stressing, in the community education programs, the fact that "high risk" parents are generally in their position as a result of their own upbringing rather than through any fault of their own. (This, in turn, may decrease motivation for change by appearing to relieve parents of responsibility for their actions. The phrase "degree of parenting potential" might be more appropriate than "high risk" or "low risk" parents.)

Another potentially serious problem must be mentioned. Laws are now being rewritten to require reporting of any suspected child abuse or neglect, even when no firm evidence exists. Law enforcement authorities might seek to subpoena the results of a screening test. Overzealous program workers might use the threat of court action to coerce "high risk" parents to consent to the training program. The program must be designed with such possibilities in mind so that safeguards can be provided. Emphasis must be given to the fact that screening for a problem does not definitively diagnose that problem.

While we have emphasized voluntary programs because of the difficulties seen with mandatory programs, one argument in favor of mandatory intervention has been neglected. One can argue that the widely held social beliefs in the rights of parents to maintain more or less exclusive control over their child-raising methods are themselves anachronistic and deleterious. Parenting is a learned skill, one may argue, and a person ought to be required to demonstrate a minimal level of that skill by a suitable method before he or she is allowed control over the life of another human being.

There is some merit to this line of argument; an advocate of intervention for "unusual child-rearing practices" might want to take this position and provoke a full-scale public debate over parental rights and responsibilities. Another approach would be to implement "routine" screening of parents who present to the health-care system for other reasons, with as little public notice as possible; this would probably only postpone the day of accounting. Finally, one could opt for a voluntary approach with emphasis on the public-education component. This alone might prove adequate in the long run. If not, the research and data generated by such a program may provide a stronger case for a mandatory program at some future date.

BIBLIOGRAPHY

1 . Institute of Society, Ethics, and the Life Sciences, Research Group on Ethical. Social, and Legal Issues in Genetic Counseling and Genetic Engineering Ethical and social issues in screening for genetic disease. N. Engl. J. Med. 286 (1972), 1129.

2. Culliton, B. J. Patient's rights: Harvard is site of battle over X and Y chromosomes. Science 186 (1974), 715. This project has been discontinued, 3. Brody, H. Ethical Decisions in Medicine. Boston: Little, Brown and Company, ch. 14. (In press.)

10.3928/0090-4481-19760301-11

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