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GENETIC KNOWLEDGE, CLIENT PERSPECTIVES, AND GENETIC COUNSELING a
b
Margaret L. Griffin MA , Carole M. Kavanagh MS & James R. Sorenson PhD c a
Research Assistant, Department of Socio-Medical Science and Community Medicine, Boston University School of Medicine, Boston, MA, 02118 b
Research Assistant, Department of Socio-Medical Sciences and Community Medicine, Boston University School of Medicine, Boston, MA, 02118 c
Associate Professor of Sociology, Department of Socio-Medical Sciences and Community Medicine, Boston University School of Medicine, Boston, MA, 02118 Published online: 26 Oct 2008.
To cite this article: Margaret L. Griffin MA , Carole M. Kavanagh MS & James R. Sorenson PhD (1977) GENETIC KNOWLEDGE, CLIENT PERSPECTIVES, AND GENETIC COUNSELING, Social Work in Health Care, 2:2, 171-180, DOI: 10.1300/J010v02n02_04 To link to this article: http://dx.doi.org/10.1300/J010v02n02_04
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions
GENETIC KNOWLEDGE, CLIENT PERSPECTIVES, AND GENETIC COUNSELING
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Margaret L. Griffin, MA Carole M. Kavanagh, MS James R. Sorenson, PhD
Medical professionals may tend t o think that genetic counseling is a relatively new form of consultation for couples contemplating reproduction. Although it is relatively new as a specialized professional medical service, in a nonprofessional medical sense it is quite old. The Bible contains references to advice-giving about marriage that suggest consideration of heritability issues similar to topics discussed in contemporary counseling. Not only is reproductive advicegiving an ancient practice, but it occurs cross-culturally. In ancient as well as modem Japan, a society in which many marriages are arranged, marriage brokers have been very much concerned with "familial diseases," taking great care to ascertain family pedigrees and to use such information to advise for or against marriages. In the United States, genetic advice-giving as a specialized activity dates back at least t o 1910, with the establishment of the old Eugenics Record Office in Cold Spring Harbor, New York.' Over the past few decades, genetic counseling has increasingly been drawn into the medical realm. For example, in 1955, 1 0 of the approximately 13 counseling clinics in this country were located in academic departments of biology o r z ~ o l o g y .By ~ 1968, the number of counseling centers had increased t o at least 97, 77% of which were located in medical setting^.^ By 1974, the total number of centers exceeded 245, most of which were located in medical institution^.^ A significant event in the development of genetic counseling as a medical activity took place in 1947 when Dr. Sheldon Reeds suggested that the then existing names for counseling, which included "genetic Ms. Griffin and Ms. Kavanagh are Research Assistants, and Dr. Sorenson is Associate Professor of Sociology, Department of Socio-Medical Sciences and Communitv Medicine. Boston Universitv School of Medicine. Boston. ~ a s s k h t k e t t s02118."Some of the data reported i n this paper are supported by grants from the National Foundation-March of Dimes, White Plains, New York. Social Work in Health Care, Vol. 2(2), Winter 1976-77
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consultation," "genetic advice," and "genetic hygiene," were inappropriate or connoted an emphasis on social and eugenic issues out of proportion t o the more traditional concerns of the physician in his patients and their individual problems. Part of Reed's concern was based on a fear that genetic advice-giving would be perceived as eugenic in intent. In addition, he felt that the word "hygiene" connoted a concern with health and cleanliness irrelevant to what transpired in genetic counseling. The label "genetic counseling" suggested by Reed is more satisfactory as a title for what counselors consider to be their task and lacks the negative connotations of former terms, such as "genetic hygiene." However, the label remains in some respects more one selected in opposition to the older labels than one chosen because of its accuracy in portraying what in fact transpires when counselor and client meet. (A variety of labels have been used to designate those who receive genetic counseling, including "patient," "counselee," and "client." We have chosen to use the word "client" since it is a familiar term in the social work literature.) The new label is also problematic, however, in that it invites multiple interpretations by both professionals and laymen. For example, as one examines the clinical literature, activities ranging from transmitting facts6 to giving direct reproductive advice7 t o psychosocial counselings are discussed by professionals under the rubric of genetic counseling. For laymen, the word "counseling" may also evoke a variety of expectations. Some may come anticipating to be told what to do, while others may not know what to expect. Given the variable interpretations by counselors and clients, it would not be surprising if at times there are significant differences between what counselors view as their task and what patients expect of genetic counseling. The definition of genetic counseling published in the American Journal of Human Genetics (AJHG)~ is perhaps the most widely accepted and certainly one of the most widely disseminated. In this definit.ion counseling is portrayed as
a communication process which deals with the human problem associated with the occurrence, or the risk o f occurrence o f a genetic disorder in a family. This process involves an attempt by one or more appropriately trained persons to help the individual or the family to (I) comprehend the medical facts, including the diagnosis, the probable course o f the disorder and the available management; (2) appreciate the way heredity contributes to the disorder and the risk o f recurrence in specified relatives; (3) understand the options for dealing with the risk o f recurrence; (4) choose the course of action which seems appropriate to them in view o f their risk and their family goals and act in accordonce with that decision; and (5) make the best possible adjustment to the disorder in an affected family member and/or to the risk o f recurrence o f that disorder.
Griffin,Kauanagh, and Sorenson
As defined, genetic counseling is a communication process with two basic goals. The first is to transmit the medical and genetic facts about a particular disorder. The second is to help clients make use of this information in a manner appropriate for them. How successful is genetic counseling in achieving these goals?
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COUNSELING EFFECTIVENESS: INFORMATION TRANSFER About 30 studies have been published to date that seek to assess the effectiveness of genetic counseling. (A list of these studies is available from the authors.) In most of these studies the criterion used for evaluation has been the ability of clients t o recall medical or genetic facts at some time after the counseling session and/or the reproductive attitudes of couples subsequent to genetic counseling. Unfortunately these studies have significant methodological weaknesses, perhaps the most serious of which is that they are retrospective in nature. It is clearly difficult to know whether or not genetic counseling has been effective when nothing is known about the knowledge and reproductive attitudes clients bring to counseling. Despite methodological limitations, the published evaluation studies suggest certain points about the impact of counseling on clients. A comparison of the results of these studies reveals a striking variation in the effectiveness of information transfer among various counseling programs. There is a wide range in the percentage of clients able t o demonstrate an adequate understanding (variously defined) of the medical and genetic information they have received. While one study reported that only 19% of a group of parents had an adequate understanding of the facts after 6 months or more of repeated discussions with a physi~ian,'~another study found that 80% of a group of parents had an adequate understanding as long as 5 years after they had received genetic counseling." Looking specifically at client ability t o recall the risk of recurrence of a particular disorder, the range is from 25% 1 t o 4 months after c ~ u n s e l i n g ' t~o 75% 1year after counseling. ti The above data indicate that there can be effective information transfer in genetic counseling. However, from the reported studies it is not possible t o ascertain what constellation of factors makes the difference in client ability t o recall such information. There are several hypotheses that might help t o explain such a wide variation in the effectiveness of information transfer in genetic counseling. An obvious consideration is the educational background of the client. For example, those with a higher level of education would be more likely to have gained some knowledge of genetics in their school-
SOCIAL WORK IN HEALTH CARE
ing and also t o have acquired certain learning skills of use in assimilating new information. Thus the transmission of information should be more effective for clients with more education. However, the existing studies indicate that this may not always be the case. At least two studies found no relation between retention of information after Counseling and level of education of the parents. In part, the lack of an association may be due t o the fact that much of genetic information is new. Even those who have studied genetics in recent years in college may not have knowledge of the revolutionary developments in the field, such as a n understanding of gene function. In addition t o the newness of genetic knowledge, the complexity of this knowledge presents a further obstacle t o the client. For example, it is not easy t o understand how a mutated gene can cause an error in the construction of a vital enzyme and thus have disastrous effects on the body. Further, the use of medical terminology during the counseling session could also limit the client's understanding of the information. In addition t o educational background and the nature of genetic information, another factor that may contribute t o the variation in client ability t o recall genetic information is that most often the recurrence risk for a particular disorder is presented in terms of a probability statement. Most people are not accustomed t o making decisions about their personal lives in terms of probabilities. I t is likely that it is difficult for people t o translate an abstract numerical recurrence risk into a personal frame of reference and t o weigh the alternative outcomes in light of their own personal desires. An inability t o recall risk information accurately may reflect the fact that the information is simply not meaningful for a client when presented in abstract terms. Information transfer may also be affected by the psychological state of the client. Several articles have been written about the psychological impact upon parents of having a child with a birth defect or genetic d i s ~ r d e r . ' ~ - 'Faleck ~ and Brittonlg have suggested that in response t o many stress-producing situations, there is a recognizable pattern of coping responses that vary depending on personal characteristics, situations, and life experiences. The stages of the proposed coping mechanism, seen as normal responses t o psychological stress, are shock and denial, anxiety, anger and/or guilt, and depression. Similar types of psychological responses may be common among couples who have already lost a child or find they are at risk t o do so. Several of the existing evaluation studies have, in fact, suggested that the psychological state of the client at the time of counseling may have an important effect on whether or not information is l e a ~ n e d . ~ ~ - ~ ~ In one study, only 38% of those who had been given risk information acknowledged having been given such figures.20 The researchers in-
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Griffin, Kauanagh, and.Sorenson
volved interpreted this finding as an indication of denial. A second study found that, after counseling, 8% of a group of parents claimed they had never been counseled, while another 8% of these parents themselves offered the suggestion that they did not recall the genetic information because it had been given too soon after the emotional shock of receiving a diagnosi~.~'Our own observations of clients (in an ongoing study of genetic counseling services funded by the National Foundation-March of Dimes) support the existence of a period of shock and denial after the birth of a defective child. During this period, counseling may not be productive because parents are unable to accept the painful reality of their problem. If clients do indeed go through such a coping mechanism upon learning that they have given birth to a defective child or that they have a certain chance of doing so, then the timing of counseling may clearly affect the dynamics and outcome of the counseling session. While the transmission of medical and genetic facts is undoubtedly an important part of genetic counseling, it follows from the AJHG definition that one cannot assess the effectiveness of the process simply on the basis of whether or not clients can recall medical and 'genetic facts. As stated in the definition, another primary goal of counseling is to help clients make the most appropriate decisions for themselves "in view of their risk and their family goals." In an attempt to examine the appropriateness of parental decisions subsequent to counseling, several studies have looked at parental attitudes about reproduction in light of recurrence risk and have generally not given much attention to the role of family goals in such decisions. A study by Carter, Evans, FraserRoberts, and found that about two-thirds of the couples who faced a high numerical risk (as they defined it, 1in 10 or greater) decided not t o have further children. However, three-fourths of the parents in the low-risk group were willing to take the risk. In the same study, a look at those high-risk parents who were willing to have another child revealed that the majority of the cases involved disorders that were relativelymild, for which treatment was available, or from which a child would die very young. This suggests that parents may consider the nature of the disorder as well as the risk in making reproductive decisions. In support of this, Leonard et al." found a strong relation between parents' perception of the burden of having a child with a particular disorder and their reproductive attitudes. It is significant t o add that in both of the above studies there was a discrepancy between the reproductive attitudes expressed by some parents after counseling and their actual behavior. These discrepancies, together with our own interviews with clients who have had counseling, suggest that there is more involved in decision making and reproductive behavior subsequent t o counseling than simply a "rational" weighing of
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the medical and genetic facts. Couples are faced with learning to use an effective method of birth control as well as adjusting parenthood desires and expectations t o the realities of risk, disease, and burden.
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COUNSELING EFFECTIVENESS: CLIENT PERSPECTIVES The above observations, while suggesting that counseling can be effective in the transfer of medical facts, also suggest that clients may be confronted with a range of obstacles t o acquiring and acting on such information. There are a variety of theories and studies and public healthz7 literatures in the social science,25 social that suggest a perspective for better understanding client behavior in medical care situations. Of most direct interest to the genetic counseling process is a learning model that has been related t o the task confronting helping professionals, such as physicians and social workers.26 Two basic ideas in this learning model relevant to the counseling process are: (a) there are two aspects of learning--the acquisition of new information and an individual's discovery of the personal meaning of the information for himself; and (b) information can effect a change in a person's behavior only t o the extent that he sees its meaning for himself. The implication of this theory for genetic counseling is clearly that if the counseling process is going to provide clients with information that they will be able t o utilize in future decision making, then this information must be put into a personal perspective for the clients. This formulation of learning fits very well with that aspect of the AJHG definition, which charges the counseling process with helping clients to "choose the course of action which seems appropriate to them in view of their risk and their family goals and act in accordance with that decision." Establishing a personal framework for clients depends on discussing both medical information and psychosocial issues. One group of client questions directly addressed by medical and genetic facts, although not necessarily resolved, includes: "What is the matter with my baby?" "What caused the problem?" "What can be done about it?" "Can anything be done to prevent this from happening again?" These are some of the basic questions clients bring t o genetic counseling. Using two important sources of information, the diagnosis and the family pedigree, the counselor attempts to provide answers to these questions. Answers may not always be as straightforward as one might expect. For example, the etiology of certain disorders may be uncertain or may include an unknown environmental component, so that the hereditary aspect cannot be singled out and pinpointed numerically. In some cases, no definite diagnosis can be made. In addition, the prognosis of some genetic disorders varies widely and cannot be accurately predicted.
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It is also the case that the presentation of medical and genetic facts may not only remove misconceptions but may also make clients aware of certain problems for the first time. For example, the prognosis for their affected child may be far worse than suspected, or the recurrence risk for them to bear another affected child may not have been anticipated or may be greater than anticipated. A second group of client questions is that which medical and genetic facts do not address. For example, counselors may think that by providing a description of the genetic etiology underlying a disorder they have adequately answered the client question "Why did this happen t o me?" However, parents of an affected child may address what has happened to them on an altogether different plane. In trying to find a cause, clients may look to such things as the use of illegal drugs or failure to follow a doctor's orders. In most cases, the client can be reassured that there is no reason to think that his actions caused the child to have a birth defect. Nevertheless, "Why did it happen to me?" can refer as much to an existential question as to a medical question. And parents may feel victimized, regardless of professional advice, wondering (a) "Why do I have a defective gene?" (b) "Why did I happen to marry someone with a defective gene?" and (c) "Why did this happen to my child?" In addition, the revelation that an individual bears a deleterious gene, while medically understandable, may be threatening to his psychological sense of sexual and reproductive competency. Such concerns may lead t o difficulty in maintaining sexual relations in an established conjugal unit2' and at times may be detrimental to that unit.'' Issues of this kind may be exacerbated if only one of a couple carries the gene responsible for a disorder, such as when a woman carries the X-linked gene for hemophilia. In this case, the imbalance in genetic responsibility may be an even greater threat t o the stability of the marriage than if both parents share the responsibility. Motivation for childbearing and desired family size represent further areas that medical and genetic facts do not address. Some clients may feel a need to prove their ability to produce a normal child after having had a defective child or learning they are at risk for doing so. Although some couples may readily be able to balance their personal desires for a normal child against the risk of having an abnormal one, others may find this difficult. If presented with genetic facts almost to the exclusion of other issues, couples may feel that only a decision based on the statistical recurrence risk is legitimate, and that one's desires for parenthood are not valid grounds for reaching a decision. A discussion of such issues in the counseling process fits well with the AJHG definition. Another area of client questions t o be discussed that is not addressed by medical or genetic facts is the uncertainty concerning the actual outcome of a pregnancy. Even when prenatal diagnosis is available, it
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can only rule out specific disorders, it cannot guarantee a normal child. In a sense, the mere presentation of a statistical recurrence risk for a genetic disorder cannot necessarily be seen as presenting the client with definitive information. Such a figure as a 2% t o 3% recurrence risk for spina bifida may be empirically verifiable and may represent definitive medical knowledge t o a counselor accustomed t o dealing with these figures, but this may be small consolation t o a couple who want t o know if their future babies will be affected. In this situation, it is likely that a counselor would feel that a decision t o conceive was rational and intelligent based on the risk information available t o parents regardless of whether the resulting child has the disorder or not. This viewpoint contrasts sharply with that of the couple faced with such a decision and the possible unfavorable outcome. For some, the jump from a recurrence risk t o the decision t o conceive and bear children is considerable indeed. Finally, while the counseling process may inform parents of the medical stigmata and management problems associated with a disorder, parents may attach social and psychological significance not suggested by the clinical description. As an example, some counselors may tend t o see the burden of a disorder as high or low depending upon its repairability. Specifically, cleft lip and palate may be seen as much less severe than some birth defects that cannot be surgically corrected. However, parents faced with the risk of bearing a child with cleft lip and palate may see the surgical repairability as only one consideration. The physical separation of child and parents due t o repeated hospitilizations during infancy and childhood may be viewed as a serious problem. Moreover, the medical problems of the child may not be seen as entirely reparable t o the parents; that is, the child is permanently and visibly marked by a facial scar and perhaps a speech impediment, both of which may be compounded by resultant psychological adjustment problems for the child. IMPLICATIONS If counseling is t o include some in-depth discussion of relevant psychosocial issues in addition t o clinical genetic facts, then this may require a good deal of time. A national survey reports the average length of a counseling session t o be 45 t o 60 minutes,29 which may be insufficient t o allow for such discussion. It is also the case that physicians with a specialty interest in genetics are a limited resource. With increasing public awareness of both the relevance and the availability of genetic counseling, it is probable that genetic counselors will experience increasing demands on their time, making an extension of the time allotted t o each client t o discuss psychosocial issues difficult if not impossible.
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Griffin, Kauanngh, and Sorenson
In light of these considerations, the medical profession needs t o consider how t o meet effectively the demand for genetic counseling, particularly if equal emphasis is t o be placed on the words "counseling" and "genetic." Alternative means of carrying out the counseling process warrant consideration. Possibilities include the establishment of genetics as a board-tertified subspecialty and/or the use of adjunct professionals. At the present time, some genetic counseling centers have already begun t o incorporate other professionals, such as social workers. Genetic associates, who have training in human genetics at the master's degree level, are utilized at some centers in a variety of roles. However, the role of these professionals in a counseling center has not been clearly defined and can vary greatly, depending on the individual and the institution. What may serve counseling well is the development of a new role, combining the psychosocial skills of the social worker and the technical knowledge of the genetic associate. In addition t o more adjunct professionals, the genetic counseling process would benefit from more information on the natural history of psychosocial processes that operate when people are confronted with genetic-related problems. Social science research is needed t o follow individuals and families over a long-term period and to investigate more carefully the dynamics of family coping and decision making. We know little in a systematic fashion about the problems defective children pose for a family, how these vary for particular disorders, and what support systems, both formal and informal, would be most helpful t o families and individuals coping with these problems. Clearly, new skills as well as knowledge are needed t o improve the counseling process. Genetic diseases are no longer an insignificant health issue, either in terms of the numbers of people affected3' or in terms of the proportion of health dollars directly or indirectly attributable t o genetic problems.31 In light of this, plus the increasing capacity t o diagnose and predict genetic disease or disorder, it is mandatory that we devote more of our health resources t o this important medical senrice.
REFERENCES 1. Haller, M. H. Eugenics: Hereditorinn Attitudes in American Thought. New Brunswick, N.J.: Rutgers University Press, 1963. 2. Hammonds, H.Hereditary Counseling. New Y o r k : American Eugenics Society, 1957. 3. National Foundation-March o f Dimes. International Directory of Genetic Services. New Y o r k : NF-MD, 1969. 4. National Foundation-March o f Dimes. International Directory o f Genetic Seruices. New Y o r k : NF-MD, 197a. 5 . Reed, S. C . " A Short History o f Genetic Counseling." Social Biology 24 (1974):332-39. 6 . Hsia, Y . E . 'Thoosing My Children's Genes: ~ e n e t i cCounseling." In Genetic Responsibility, edited b y M. Lipkin and R . T . Rowley. New Y o r k : Plenum h e s s , 1973. 7 . Stevenson, A. C.; Davison, B. C.; and Oakes, M . W . Genetic Counseling. Philadelphia: J. B. Lippincott, 1970.
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Lynch, H. T. Dynamic Genetic Counseling for Clinicians. Springfield, Ill.: Charles C Thomas, 1969. Fraser, F. C. "Genetic Counseling." American Journal of Human Genetics 26 (1974):636-59. Sibinga, M. S., and Friedman, C. J. "Complexities of Parental Understanding of Phenylketonuria." Pediatrics 48 (1971):216-24. Reynolds, B. D.; Puck, M. H.; and Robinson, A. "Genetic Counseling: An Appraisal." Clinical Genetics 5 (1974):177-87. Reiss, J. A,, and Menashe, V. "Genetic Counseling and Congenital Heart Disease." Journal of Pediatrics 80(1972):655-56. McLucas, B. B.; Hsia, Y. E.; and Mick, S. S. "At Risk: A Study of Connecticut Families with Duchenne's Muscular Dystrophy." New Haven: Yale University, Department of Human Genetics, 1974. Solnit, A,, and Stark, M. "Mourning and the Birth of a Defective Child." Psychoanalytic Study of the Child 1 6 (1961):523-37. Lax, R. "Some Aspects of the Interaction between Mother and Impaired Child." International Journal of Psychoanalysis 5 3 (1972):339-44. Forrer, G. R. "The Mother of a Defective Child." Psychoanalytic Quarterly 28 (1959):59-63. Johns, N. "Family Reactions to the Birth of a Child with a Congential Abnormality." Obstetrical and Gynecological Suruey 26 (1971):635-36. Olshansky, S. "Chronic Sorrow: A Response to Having a Mentally Defective Child." Social Casework 43 (1962):190-93. Faleck, A., and Britton, S. "Phases in Coping: The Hypothesis and Its Implications." Social Biology 2 1 ( 1 9 7 4 ) : l l . Pearn, J. H., and Wilson, J. "Acute Werdnig-Hoffman Disease." Archiues of Diseases in Childhood 48 (1973):425-30. Leonard, C.; Chase, G.; and Childs, B. "Genetic Counseling: A Consumer's View." New England Journal of Medicine 287 (1972):433-39. McCrea, W. M.; Cull, A. M.; Burton, L.; and Dodge, J. "Cystic Fibrosis: Parents' Response t o the Genetic Role of the Disease." Lancet, July 21, 1973, pp. 141-44. Hsia, Y. E. "Lessons Learned from Evaluating a Genetic Clinic." In Genetic Counseling, Public Health Service Publication, United States Department of Health, Education, and Welfare. Washington, D.C.: Government Printing Office, in press. Carter. C.; Evans, K.; Fraser-Roberts, J. A.; and Buck, A. "Genetic Clinic: A Follow Up." Lancet, February 6,1971, pp. 281-85. McKinley, J. B. "Some Approaches and Problems in the Study of the Use of Services: An Overview." Journal of Health and Social Behauior 1 3 (1972):115-41. Combs, A. W.; Avila, D. L.; and Purkey, W. W. Helping Relationships: Basic Concepts for the Helping Professions. Boston: Allyn & Bacon, 1971. Becker, M. H., ed. "The Health Belief Model and Personal Health Behavior." Health Education Monographs 2 (1974):328-508. Emery. A. E. H.; Watt, M. S.; and Clack, E. "Social Effects of Genetic Counseling." British Medical Journal 1 (1973):724-26. Sorenson, J. R., with the assistance of Culbert, A. J. "Genetic Counselors and Counseling Orientations: Unexamined Topics, an Evaluation." In Genetic Counseling, Public Health Service Publication, United States Department of Health, Education, and Welfare. Washington, D.C.: Government Printing Office. in press. gar; v.; and Stickle, G. "Birth Defects." Journal of the American Medical Association 204 (1968):79-82. 31. "Genetic Defects." Perspectives 8 (1973):28-33.
Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
GENETIC KNOWLEDGE, CLIENT PERSPECTIVES, AND GENETIC COUNSELING a
b
Margaret L. Griffin MA , Carole M. Kavanagh MS & James R. Sorenson PhD c a
Research Assistant, Department of Socio-Medical Science and Community Medicine, Boston University School of Medicine, Boston, MA, 02118 b
Research Assistant, Department of Socio-Medical Sciences and Community Medicine, Boston University School of Medicine, Boston, MA, 02118 c
Associate Professor of Sociology, Department of Socio-Medical Sciences and Community Medicine, Boston University School of Medicine, Boston, MA, 02118 Published online: 26 Oct 2008.
To cite this article: Margaret L. Griffin MA , Carole M. Kavanagh MS & James R. Sorenson PhD (1977) GENETIC KNOWLEDGE, CLIENT PERSPECTIVES, AND GENETIC COUNSELING, Social Work in Health Care, 2:2, 171-180, DOI: 10.1300/J010v02n02_04 To link to this article: http://dx.doi.org/10.1300/J010v02n02_04
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions
GENETIC KNOWLEDGE, CLIENT PERSPECTIVES, AND GENETIC COUNSELING
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Margaret L. Griffin, MA Carole M. Kavanagh, MS James R. Sorenson, PhD
Medical professionals may tend t o think that genetic counseling is a relatively new form of consultation for couples contemplating reproduction. Although it is relatively new as a specialized professional medical service, in a nonprofessional medical sense it is quite old. The Bible contains references to advice-giving about marriage that suggest consideration of heritability issues similar to topics discussed in contemporary counseling. Not only is reproductive advicegiving an ancient practice, but it occurs cross-culturally. In ancient as well as modem Japan, a society in which many marriages are arranged, marriage brokers have been very much concerned with "familial diseases," taking great care to ascertain family pedigrees and to use such information to advise for or against marriages. In the United States, genetic advice-giving as a specialized activity dates back at least t o 1910, with the establishment of the old Eugenics Record Office in Cold Spring Harbor, New York.' Over the past few decades, genetic counseling has increasingly been drawn into the medical realm. For example, in 1955, 1 0 of the approximately 13 counseling clinics in this country were located in academic departments of biology o r z ~ o l o g y .By ~ 1968, the number of counseling centers had increased t o at least 97, 77% of which were located in medical setting^.^ By 1974, the total number of centers exceeded 245, most of which were located in medical institution^.^ A significant event in the development of genetic counseling as a medical activity took place in 1947 when Dr. Sheldon Reeds suggested that the then existing names for counseling, which included "genetic Ms. Griffin and Ms. Kavanagh are Research Assistants, and Dr. Sorenson is Associate Professor of Sociology, Department of Socio-Medical Sciences and Communitv Medicine. Boston Universitv School of Medicine. Boston. ~ a s s k h t k e t t s02118."Some of the data reported i n this paper are supported by grants from the National Foundation-March of Dimes, White Plains, New York. Social Work in Health Care, Vol. 2(2), Winter 1976-77
171
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consultation," "genetic advice," and "genetic hygiene," were inappropriate or connoted an emphasis on social and eugenic issues out of proportion t o the more traditional concerns of the physician in his patients and their individual problems. Part of Reed's concern was based on a fear that genetic advice-giving would be perceived as eugenic in intent. In addition, he felt that the word "hygiene" connoted a concern with health and cleanliness irrelevant to what transpired in genetic counseling. The label "genetic counseling" suggested by Reed is more satisfactory as a title for what counselors consider to be their task and lacks the negative connotations of former terms, such as "genetic hygiene." However, the label remains in some respects more one selected in opposition to the older labels than one chosen because of its accuracy in portraying what in fact transpires when counselor and client meet. (A variety of labels have been used to designate those who receive genetic counseling, including "patient," "counselee," and "client." We have chosen to use the word "client" since it is a familiar term in the social work literature.) The new label is also problematic, however, in that it invites multiple interpretations by both professionals and laymen. For example, as one examines the clinical literature, activities ranging from transmitting facts6 to giving direct reproductive advice7 t o psychosocial counselings are discussed by professionals under the rubric of genetic counseling. For laymen, the word "counseling" may also evoke a variety of expectations. Some may come anticipating to be told what to do, while others may not know what to expect. Given the variable interpretations by counselors and clients, it would not be surprising if at times there are significant differences between what counselors view as their task and what patients expect of genetic counseling. The definition of genetic counseling published in the American Journal of Human Genetics (AJHG)~ is perhaps the most widely accepted and certainly one of the most widely disseminated. In this definit.ion counseling is portrayed as
a communication process which deals with the human problem associated with the occurrence, or the risk o f occurrence o f a genetic disorder in a family. This process involves an attempt by one or more appropriately trained persons to help the individual or the family to (I) comprehend the medical facts, including the diagnosis, the probable course o f the disorder and the available management; (2) appreciate the way heredity contributes to the disorder and the risk o f recurrence in specified relatives; (3) understand the options for dealing with the risk o f recurrence; (4) choose the course of action which seems appropriate to them in view o f their risk and their family goals and act in accordonce with that decision; and (5) make the best possible adjustment to the disorder in an affected family member and/or to the risk o f recurrence o f that disorder.
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As defined, genetic counseling is a communication process with two basic goals. The first is to transmit the medical and genetic facts about a particular disorder. The second is to help clients make use of this information in a manner appropriate for them. How successful is genetic counseling in achieving these goals?
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COUNSELING EFFECTIVENESS: INFORMATION TRANSFER About 30 studies have been published to date that seek to assess the effectiveness of genetic counseling. (A list of these studies is available from the authors.) In most of these studies the criterion used for evaluation has been the ability of clients t o recall medical or genetic facts at some time after the counseling session and/or the reproductive attitudes of couples subsequent to genetic counseling. Unfortunately these studies have significant methodological weaknesses, perhaps the most serious of which is that they are retrospective in nature. It is clearly difficult to know whether or not genetic counseling has been effective when nothing is known about the knowledge and reproductive attitudes clients bring to counseling. Despite methodological limitations, the published evaluation studies suggest certain points about the impact of counseling on clients. A comparison of the results of these studies reveals a striking variation in the effectiveness of information transfer among various counseling programs. There is a wide range in the percentage of clients able t o demonstrate an adequate understanding (variously defined) of the medical and genetic information they have received. While one study reported that only 19% of a group of parents had an adequate understanding of the facts after 6 months or more of repeated discussions with a physi~ian,'~another study found that 80% of a group of parents had an adequate understanding as long as 5 years after they had received genetic counseling." Looking specifically at client ability t o recall the risk of recurrence of a particular disorder, the range is from 25% 1 t o 4 months after c ~ u n s e l i n g ' t~o 75% 1year after counseling. ti The above data indicate that there can be effective information transfer in genetic counseling. However, from the reported studies it is not possible t o ascertain what constellation of factors makes the difference in client ability t o recall such information. There are several hypotheses that might help t o explain such a wide variation in the effectiveness of information transfer in genetic counseling. An obvious consideration is the educational background of the client. For example, those with a higher level of education would be more likely to have gained some knowledge of genetics in their school-
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ing and also t o have acquired certain learning skills of use in assimilating new information. Thus the transmission of information should be more effective for clients with more education. However, the existing studies indicate that this may not always be the case. At least two studies found no relation between retention of information after Counseling and level of education of the parents. In part, the lack of an association may be due t o the fact that much of genetic information is new. Even those who have studied genetics in recent years in college may not have knowledge of the revolutionary developments in the field, such as a n understanding of gene function. In addition t o the newness of genetic knowledge, the complexity of this knowledge presents a further obstacle t o the client. For example, it is not easy t o understand how a mutated gene can cause an error in the construction of a vital enzyme and thus have disastrous effects on the body. Further, the use of medical terminology during the counseling session could also limit the client's understanding of the information. In addition t o educational background and the nature of genetic information, another factor that may contribute t o the variation in client ability t o recall genetic information is that most often the recurrence risk for a particular disorder is presented in terms of a probability statement. Most people are not accustomed t o making decisions about their personal lives in terms of probabilities. I t is likely that it is difficult for people t o translate an abstract numerical recurrence risk into a personal frame of reference and t o weigh the alternative outcomes in light of their own personal desires. An inability t o recall risk information accurately may reflect the fact that the information is simply not meaningful for a client when presented in abstract terms. Information transfer may also be affected by the psychological state of the client. Several articles have been written about the psychological impact upon parents of having a child with a birth defect or genetic d i s ~ r d e r . ' ~ - 'Faleck ~ and Brittonlg have suggested that in response t o many stress-producing situations, there is a recognizable pattern of coping responses that vary depending on personal characteristics, situations, and life experiences. The stages of the proposed coping mechanism, seen as normal responses t o psychological stress, are shock and denial, anxiety, anger and/or guilt, and depression. Similar types of psychological responses may be common among couples who have already lost a child or find they are at risk t o do so. Several of the existing evaluation studies have, in fact, suggested that the psychological state of the client at the time of counseling may have an important effect on whether or not information is l e a ~ n e d . ~ ~ - ~ ~ In one study, only 38% of those who had been given risk information acknowledged having been given such figures.20 The researchers in-
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volved interpreted this finding as an indication of denial. A second study found that, after counseling, 8% of a group of parents claimed they had never been counseled, while another 8% of these parents themselves offered the suggestion that they did not recall the genetic information because it had been given too soon after the emotional shock of receiving a diagnosi~.~'Our own observations of clients (in an ongoing study of genetic counseling services funded by the National Foundation-March of Dimes) support the existence of a period of shock and denial after the birth of a defective child. During this period, counseling may not be productive because parents are unable to accept the painful reality of their problem. If clients do indeed go through such a coping mechanism upon learning that they have given birth to a defective child or that they have a certain chance of doing so, then the timing of counseling may clearly affect the dynamics and outcome of the counseling session. While the transmission of medical and genetic facts is undoubtedly an important part of genetic counseling, it follows from the AJHG definition that one cannot assess the effectiveness of the process simply on the basis of whether or not clients can recall medical and 'genetic facts. As stated in the definition, another primary goal of counseling is to help clients make the most appropriate decisions for themselves "in view of their risk and their family goals." In an attempt to examine the appropriateness of parental decisions subsequent to counseling, several studies have looked at parental attitudes about reproduction in light of recurrence risk and have generally not given much attention to the role of family goals in such decisions. A study by Carter, Evans, FraserRoberts, and found that about two-thirds of the couples who faced a high numerical risk (as they defined it, 1in 10 or greater) decided not t o have further children. However, three-fourths of the parents in the low-risk group were willing to take the risk. In the same study, a look at those high-risk parents who were willing to have another child revealed that the majority of the cases involved disorders that were relativelymild, for which treatment was available, or from which a child would die very young. This suggests that parents may consider the nature of the disorder as well as the risk in making reproductive decisions. In support of this, Leonard et al." found a strong relation between parents' perception of the burden of having a child with a particular disorder and their reproductive attitudes. It is significant t o add that in both of the above studies there was a discrepancy between the reproductive attitudes expressed by some parents after counseling and their actual behavior. These discrepancies, together with our own interviews with clients who have had counseling, suggest that there is more involved in decision making and reproductive behavior subsequent t o counseling than simply a "rational" weighing of
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the medical and genetic facts. Couples are faced with learning to use an effective method of birth control as well as adjusting parenthood desires and expectations t o the realities of risk, disease, and burden.
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COUNSELING EFFECTIVENESS: CLIENT PERSPECTIVES The above observations, while suggesting that counseling can be effective in the transfer of medical facts, also suggest that clients may be confronted with a range of obstacles t o acquiring and acting on such information. There are a variety of theories and studies and public healthz7 literatures in the social science,25 social that suggest a perspective for better understanding client behavior in medical care situations. Of most direct interest to the genetic counseling process is a learning model that has been related t o the task confronting helping professionals, such as physicians and social workers.26 Two basic ideas in this learning model relevant to the counseling process are: (a) there are two aspects of learning--the acquisition of new information and an individual's discovery of the personal meaning of the information for himself; and (b) information can effect a change in a person's behavior only t o the extent that he sees its meaning for himself. The implication of this theory for genetic counseling is clearly that if the counseling process is going to provide clients with information that they will be able t o utilize in future decision making, then this information must be put into a personal perspective for the clients. This formulation of learning fits very well with that aspect of the AJHG definition, which charges the counseling process with helping clients to "choose the course of action which seems appropriate to them in view of their risk and their family goals and act in accordance with that decision." Establishing a personal framework for clients depends on discussing both medical information and psychosocial issues. One group of client questions directly addressed by medical and genetic facts, although not necessarily resolved, includes: "What is the matter with my baby?" "What caused the problem?" "What can be done about it?" "Can anything be done to prevent this from happening again?" These are some of the basic questions clients bring t o genetic counseling. Using two important sources of information, the diagnosis and the family pedigree, the counselor attempts to provide answers to these questions. Answers may not always be as straightforward as one might expect. For example, the etiology of certain disorders may be uncertain or may include an unknown environmental component, so that the hereditary aspect cannot be singled out and pinpointed numerically. In some cases, no definite diagnosis can be made. In addition, the prognosis of some genetic disorders varies widely and cannot be accurately predicted.
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It is also the case that the presentation of medical and genetic facts may not only remove misconceptions but may also make clients aware of certain problems for the first time. For example, the prognosis for their affected child may be far worse than suspected, or the recurrence risk for them to bear another affected child may not have been anticipated or may be greater than anticipated. A second group of client questions is that which medical and genetic facts do not address. For example, counselors may think that by providing a description of the genetic etiology underlying a disorder they have adequately answered the client question "Why did this happen t o me?" However, parents of an affected child may address what has happened to them on an altogether different plane. In trying to find a cause, clients may look to such things as the use of illegal drugs or failure to follow a doctor's orders. In most cases, the client can be reassured that there is no reason to think that his actions caused the child to have a birth defect. Nevertheless, "Why did it happen to me?" can refer as much to an existential question as to a medical question. And parents may feel victimized, regardless of professional advice, wondering (a) "Why do I have a defective gene?" (b) "Why did I happen to marry someone with a defective gene?" and (c) "Why did this happen to my child?" In addition, the revelation that an individual bears a deleterious gene, while medically understandable, may be threatening to his psychological sense of sexual and reproductive competency. Such concerns may lead t o difficulty in maintaining sexual relations in an established conjugal unit2' and at times may be detrimental to that unit.'' Issues of this kind may be exacerbated if only one of a couple carries the gene responsible for a disorder, such as when a woman carries the X-linked gene for hemophilia. In this case, the imbalance in genetic responsibility may be an even greater threat t o the stability of the marriage than if both parents share the responsibility. Motivation for childbearing and desired family size represent further areas that medical and genetic facts do not address. Some clients may feel a need to prove their ability to produce a normal child after having had a defective child or learning they are at risk for doing so. Although some couples may readily be able to balance their personal desires for a normal child against the risk of having an abnormal one, others may find this difficult. If presented with genetic facts almost to the exclusion of other issues, couples may feel that only a decision based on the statistical recurrence risk is legitimate, and that one's desires for parenthood are not valid grounds for reaching a decision. A discussion of such issues in the counseling process fits well with the AJHG definition. Another area of client questions t o be discussed that is not addressed by medical or genetic facts is the uncertainty concerning the actual outcome of a pregnancy. Even when prenatal diagnosis is available, it
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can only rule out specific disorders, it cannot guarantee a normal child. In a sense, the mere presentation of a statistical recurrence risk for a genetic disorder cannot necessarily be seen as presenting the client with definitive information. Such a figure as a 2% t o 3% recurrence risk for spina bifida may be empirically verifiable and may represent definitive medical knowledge t o a counselor accustomed t o dealing with these figures, but this may be small consolation t o a couple who want t o know if their future babies will be affected. In this situation, it is likely that a counselor would feel that a decision t o conceive was rational and intelligent based on the risk information available t o parents regardless of whether the resulting child has the disorder or not. This viewpoint contrasts sharply with that of the couple faced with such a decision and the possible unfavorable outcome. For some, the jump from a recurrence risk t o the decision t o conceive and bear children is considerable indeed. Finally, while the counseling process may inform parents of the medical stigmata and management problems associated with a disorder, parents may attach social and psychological significance not suggested by the clinical description. As an example, some counselors may tend t o see the burden of a disorder as high or low depending upon its repairability. Specifically, cleft lip and palate may be seen as much less severe than some birth defects that cannot be surgically corrected. However, parents faced with the risk of bearing a child with cleft lip and palate may see the surgical repairability as only one consideration. The physical separation of child and parents due t o repeated hospitilizations during infancy and childhood may be viewed as a serious problem. Moreover, the medical problems of the child may not be seen as entirely reparable t o the parents; that is, the child is permanently and visibly marked by a facial scar and perhaps a speech impediment, both of which may be compounded by resultant psychological adjustment problems for the child. IMPLICATIONS If counseling is t o include some in-depth discussion of relevant psychosocial issues in addition t o clinical genetic facts, then this may require a good deal of time. A national survey reports the average length of a counseling session t o be 45 t o 60 minutes,29 which may be insufficient t o allow for such discussion. It is also the case that physicians with a specialty interest in genetics are a limited resource. With increasing public awareness of both the relevance and the availability of genetic counseling, it is probable that genetic counselors will experience increasing demands on their time, making an extension of the time allotted t o each client t o discuss psychosocial issues difficult if not impossible.
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In light of these considerations, the medical profession needs t o consider how t o meet effectively the demand for genetic counseling, particularly if equal emphasis is t o be placed on the words "counseling" and "genetic." Alternative means of carrying out the counseling process warrant consideration. Possibilities include the establishment of genetics as a board-tertified subspecialty and/or the use of adjunct professionals. At the present time, some genetic counseling centers have already begun t o incorporate other professionals, such as social workers. Genetic associates, who have training in human genetics at the master's degree level, are utilized at some centers in a variety of roles. However, the role of these professionals in a counseling center has not been clearly defined and can vary greatly, depending on the individual and the institution. What may serve counseling well is the development of a new role, combining the psychosocial skills of the social worker and the technical knowledge of the genetic associate. In addition t o more adjunct professionals, the genetic counseling process would benefit from more information on the natural history of psychosocial processes that operate when people are confronted with genetic-related problems. Social science research is needed t o follow individuals and families over a long-term period and to investigate more carefully the dynamics of family coping and decision making. We know little in a systematic fashion about the problems defective children pose for a family, how these vary for particular disorders, and what support systems, both formal and informal, would be most helpful t o families and individuals coping with these problems. Clearly, new skills as well as knowledge are needed t o improve the counseling process. Genetic diseases are no longer an insignificant health issue, either in terms of the numbers of people affected3' or in terms of the proportion of health dollars directly or indirectly attributable t o genetic problems.31 In light of this, plus the increasing capacity t o diagnose and predict genetic disease or disorder, it is mandatory that we devote more of our health resources t o this important medical senrice.
REFERENCES 1. Haller, M. H. Eugenics: Hereditorinn Attitudes in American Thought. New Brunswick, N.J.: Rutgers University Press, 1963. 2. Hammonds, H.Hereditary Counseling. New Y o r k : American Eugenics Society, 1957. 3. National Foundation-March o f Dimes. International Directory of Genetic Services. New Y o r k : NF-MD, 1969. 4. National Foundation-March o f Dimes. International Directory o f Genetic Seruices. New Y o r k : NF-MD, 197a. 5 . Reed, S. C . " A Short History o f Genetic Counseling." Social Biology 24 (1974):332-39. 6 . Hsia, Y . E . 'Thoosing My Children's Genes: ~ e n e t i cCounseling." In Genetic Responsibility, edited b y M. Lipkin and R . T . Rowley. New Y o r k : Plenum h e s s , 1973. 7 . Stevenson, A. C.; Davison, B. C.; and Oakes, M . W . Genetic Counseling. Philadelphia: J. B. Lippincott, 1970.
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Lynch, H. T. Dynamic Genetic Counseling for Clinicians. Springfield, Ill.: Charles C Thomas, 1969. Fraser, F. C. "Genetic Counseling." American Journal of Human Genetics 26 (1974):636-59. Sibinga, M. S., and Friedman, C. J. "Complexities of Parental Understanding of Phenylketonuria." Pediatrics 48 (1971):216-24. Reynolds, B. D.; Puck, M. H.; and Robinson, A. "Genetic Counseling: An Appraisal." Clinical Genetics 5 (1974):177-87. Reiss, J. A,, and Menashe, V. "Genetic Counseling and Congenital Heart Disease." Journal of Pediatrics 80(1972):655-56. McLucas, B. B.; Hsia, Y. E.; and Mick, S. S. "At Risk: A Study of Connecticut Families with Duchenne's Muscular Dystrophy." New Haven: Yale University, Department of Human Genetics, 1974. Solnit, A,, and Stark, M. "Mourning and the Birth of a Defective Child." Psychoanalytic Study of the Child 1 6 (1961):523-37. Lax, R. "Some Aspects of the Interaction between Mother and Impaired Child." International Journal of Psychoanalysis 5 3 (1972):339-44. Forrer, G. R. "The Mother of a Defective Child." Psychoanalytic Quarterly 28 (1959):59-63. Johns, N. "Family Reactions to the Birth of a Child with a Congential Abnormality." Obstetrical and Gynecological Suruey 26 (1971):635-36. Olshansky, S. "Chronic Sorrow: A Response to Having a Mentally Defective Child." Social Casework 43 (1962):190-93. Faleck, A., and Britton, S. "Phases in Coping: The Hypothesis and Its Implications." Social Biology 2 1 ( 1 9 7 4 ) : l l . Pearn, J. H., and Wilson, J. "Acute Werdnig-Hoffman Disease." Archiues of Diseases in Childhood 48 (1973):425-30. Leonard, C.; Chase, G.; and Childs, B. "Genetic Counseling: A Consumer's View." New England Journal of Medicine 287 (1972):433-39. McCrea, W. M.; Cull, A. M.; Burton, L.; and Dodge, J. "Cystic Fibrosis: Parents' Response t o the Genetic Role of the Disease." Lancet, July 21, 1973, pp. 141-44. Hsia, Y. E. "Lessons Learned from Evaluating a Genetic Clinic." In Genetic Counseling, Public Health Service Publication, United States Department of Health, Education, and Welfare. Washington, D.C.: Government Printing Office, in press. Carter. C.; Evans, K.; Fraser-Roberts, J. A.; and Buck, A. "Genetic Clinic: A Follow Up." Lancet, February 6,1971, pp. 281-85. McKinley, J. B. "Some Approaches and Problems in the Study of the Use of Services: An Overview." Journal of Health and Social Behauior 1 3 (1972):115-41. Combs, A. W.; Avila, D. L.; and Purkey, W. W. Helping Relationships: Basic Concepts for the Helping Professions. Boston: Allyn & Bacon, 1971. Becker, M. H., ed. "The Health Belief Model and Personal Health Behavior." Health Education Monographs 2 (1974):328-508. Emery. A. E. H.; Watt, M. S.; and Clack, E. "Social Effects of Genetic Counseling." British Medical Journal 1 (1973):724-26. Sorenson, J. R., with the assistance of Culbert, A. J. "Genetic Counselors and Counseling Orientations: Unexamined Topics, an Evaluation." In Genetic Counseling, Public Health Service Publication, United States Department of Health, Education, and Welfare. Washington, D.C.: Government Printing Office. in press. gar; v.; and Stickle, G. "Birth Defects." Journal of the American Medical Association 204 (1968):79-82. 31. "Genetic Defects." Perspectives 8 (1973):28-33.
