Genetic Counseling - Europe PMC

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Aug 25, 1975 - program for genetic counseling services, using public health nurses as a major ... From theDepartments of Medicine (Ms. Reid, Ms. Prichard.
Refer to: Reid KJ, Sakati N, Prichard LL, et al: Genetic counseling-An evaluation of public health genetic clinics. West J Med 124:6-12, Jan 1976

Genetic Counseling An Evaluation of Public Health Genetic Clinics KATHRYN J. REID, BS; NADIA SAKATI, MD; LORRAINE L. PRICHARD, PHN; LAWRENCE J. SCHNEIDERMAN, MD, and OLIVER W. JONES, MD, La Jolla BARBARA K. DIXSON, RN, MN, San Diego

The geographic distribution of County Health Department clinic facilities in the state of California has made it readily possible to establish a regionalized program for genetic counseling services, using public health nurses as a major source of case-finding. From both consumer and health professional standpoints, regionalized satellite genetic counseling clinics have been successful, and in particular, the effectiveness of public health nurses in identifying clinical genetic problems is readily apparent. Long-term follow-up reinforcement of genetic counseling appears to be an important conclusion from these studies. It is our suggestion that reinforcement of counseling would best be accomplished through the health team member (physician, nurse and so forth) following the patient or family rather than through the consulting geneticist. GENETIC SERVICES, especially genetic counseling, are adaptable to implementation in ways that need not comply with the standard medical center concept of a hospital clinic to which all patients are channeled by a variety of referral mechanisms. Moreover, genetic services can be quite variable. They may require the sophisticated techniques available in a major medical center. On the other hand, most genetic counseling problems can be handled explicitly if the diagnosis is already established. All that is really needed for a genetic counselor is a place to talk and the ability to communicate. From the Departments of Medicine (Ms. Reid, Ms. Prichard and Dr. Jones), Pediatrics (Drs. Sakati and Jones), and Community Medicine (Dr. Schneiderman), University of California, San Diego, School of Medicine, La Jolla; and the Regional Center for Developmental Disabilities, Children's Health Center, San Diego (Ms. Dixson). Submitted, revised, August 25, 1975. Supported by grants from The National Foundation, March of Dimes (CRBS 242) and the National Institutes of Health (GM17702). Reprint requests to: Oliver W. Jones, MD, Department of Medicine (M-013), University of California, San Diego, School of Medicine, La Jolla, CA 92093.

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At our Genetics Clinic at mid-city University Hospital, affiliated with the University of California, San Diego School of Medicine, we were impressed with the degree of attrition in referrals for genetic services through departmental subspecialty clinics. Also, it appeared that patients seen in the medical center clinics represented only a fraction of families with genetic problems living in the community. Many families who might want or need genetic services presumably were not aware of their availability or, because of the midcity location of University Hospital, found it difficult to reach the source of these services. This report reflects the initial results from an 18-month effort, started in 1970 and still continuing, to (1) extend genetic services beyond the usual confines of a major medical center, (2) ascertain the response of families to these services and (3) learn the potential of other health professionals in helping to deliver genetic health care services.

GENETIC COUNSELING

In California there exists an excellent Department of Public Health with regional Public Health Centers located throughout each county. These clinics are staffed by public health nurses and physicians responsible for a variety of health care services, such as immunization, well-baby care, and pediatric and prenatal care. We elected

to use this matrix for the delivery of genetic services in San Diego County which, with seven regional health centers, serves a population of 800,000 persons. Health care is continuous through this health center system, with the nursing staff of each center in contact with families in the regional areas.

TABLE 1.-Patients Seen at Public Health Center Genetics Clinic Follow-up for Families Available

Clinical Problem

Abortions, multiple spontaneous. Albinism, cutaneous ............... Albinism, tyrosinase negative ....... Anhidrotic ectodermal dysplasia. . Apert's syndrome ... Arterio-venous malformation ........ Beckwith's syndrome ............... Biliary atresia ..................... Cataracts and nystagmus ............ Cataracts, bilateral, polar ........... Cataracts, congenital ............... Celiac disease ..................... Cerebral palsy .................... Circulatory abnormalities, possible ... Cleft lip and palate ................ Club foot ........................ Club foot, congenital hip defect and urethral stricture ................ Corneal dystrophy, lattice-type ...... Craniosynostosis ................. Cystic fibrosis ..................... Delayed development, etiology unknown Diabetes mellitus .................. Down's syndrome ................. Drug use ......................... Dubin-Johnson syndrome ........... Duchenne muscular dystrophy ....... Ear deformity .................... Epilepsy .......................... Facio-scapulo-humeral muscular dystrophy ...... Familial pulmonary emphysema ..... Familial tremor ................... Friedrich's ataxia .................. Galactosemia ..................... .

Glaucoma, congenital .............. Hand, congenital absence ........... Heart disease, congenital ........... Hemophilia, factor VIII deficiency ... Hip, bilateral dislocation ............ Hip, dislocation ................... Holt-Oram syndrome .............. Homocystinuria. Huntington's chorea ............... Hydranencephaly. Hydrocephalus .................... Hyperlipoproteinemia, type IV ...... Hypothyroidism. Imperforate anus ..................

2 1

2

1 1 2 1

1 1 1 1

1 4 4 4

1 3 1

1

2 3

1 8 17 2

6 2

1 4

1 2 2 2 1

1

1 1 1 1

2

1

1

2

2 1

1 3 1

1 1

3 1

Follow-up for Families Not Available Available

Clinical Problem

Mental retardation, etiology unknown 4 Mental retardation from cerebral hemorrhage .......... ........... .. Microcephaly .......... ........... 2 Microcephaly and pulmonary vascular hypoplasia ................ Microphthalmia ................ 1... Multiple congenital anomalies ....... 2 Myasthenia gravis and Down's 1 syndrome ...... ......... .. Myelomeningocele ........ Narcolepsy ........................ .. Nerve deafness ...................... Nerve deafness, bilateral ........... 1 Nerve deafness, cleft lip and palate ... 1 Neurofibromatosis. Nystagmus ............... ... 1 Ocular albinism ..................... 1 Oculomotor apraxia ............... Osteodysplasty .................. 1 Osteogenesis imperfecta ............ 4 Penis, congenital absence ............ .. Pescaves, familial .................. 1 Phenylketonuria .................. 1

2 1

1

4

.

2

Intussusception.

Klippel-Trenaunqy-Weber syndrome .. Marfan's syndrome ................ Meningomyelocele with hydrocephaly .

Not Available

1 1

i 1 3 1 1

1

Phocomelia ............1...... Phocomelia and hemophilia ......... 1 Pierre-Robin syndrome ............. 2 1 Pyloric stenosis and anencephaly ..... 1 Recto-vaginal fistula ............... Retinal detachment ................ 1 3 Retinitis pigmentosa ...............

1

2 Retinoblastoma .................. Rh incompatibility .................. Rh incompatibility and respiratory distress syndrome ................. 1

3

Schizophrenia ...............1...... Short stature.- ...'................. ... Shotsatue Sickle cell anemia or trait ..... ..... 9 Spielmeyer-Vogt disease ...... ...... 1 Strabismus, familial ........1....... Subdural hematoma .................. Sudden infant death .................. Syndactyly, bilateral ............... 2 Thalassemia minor ................. .. Tracheo-esophageal fistula .......... 1 Treacher Collins syndrome .......... 2 1 Turner's syndrome .................

2 8 1 1 1

1

Urethral atresia ................... 3 Urticaria pigmentosa ................. Vesico-ureteral reflux ................ 1 ............ Vitiligo ....... von Willebrand's disease ........ 1.... Wilm's tumor .......... ............ 1 THE WESTERN JOURNAL OF MEDICINE

1 1

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GENETIC COUNSELING

Our interest in coordinating genetic services with the health centers provided a two-way opportunity: (1) patients would have a readily accessible route for referral for genetic services and (2) interaction between genetic health care specialists and public health nurses would provide the opportunity for increasing the skills of the nursing staff in recognizing genetic diseases and participating in genetic counseling.

Outline of the Program The clinics were conducted in rotation at each of the seven health centers two half-days each week. The nursing staff of each clinic received 20 to 24 hours of didactic instruction in genetics including mendelian, X-linked and empiric risks with multifactorial inheritance mechanisms and chromosomal abnormalities. We established no rigid guidelines for the nursing staff to follow as to who might have a genetic problem and who might not. They were encouraged to refer any patient or family they felt might have a genetic problem or who expressed interest in genetic counseling. Both the nurses and the referring physician involved with any patient or family received a written summary of the genetic evaluation and counseling. The referring public health nurse participated in the genetic counseling session with the attending staff at each clinic visit. At the end of each clinic day, the attending physician-counselor conducted a genetics seminar with the entire nursing staff, either using the case of a patient seen in that particular clinic or discussing a particular genetic entity to emphasize specific disciplines in genetics and counseling and to broaden the nurses' overall understanding of genetic disorders. During the period of this report ( 18 months), 232 patients or family units were referred for diagnosis and counseling. A 47-part questionnaire was sent to each family and of the 232 families to whom we sent questionnaires, 70 could not be reached by mail (left original location with no forwarding address) or by phone. In part, this probably reflects the relatively transient population in parts of California. Of the 162 families contacted, 144 (89 percent) returned a completed questionnaire. Table 1 shows the various diagnoses for which the families were seen. The subsequent data in this report are related to the 144 patients who submitted completed questionnaires. Comparison of data in Table 1 shows a reasonable degree of similarity between the medi8

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cal problems encountered in the group unavailable for follow-up and the group which was contacted for follow-up. From the total number (144) of responding families seen at the health centers, we found that approximately 50 percent could be counseled without further study based upon a well-established diagnosis confirmed by our obtaining the patient's medical records. The remaining approximately 50 percent required further evaluation for diagnosis before counseling. This further evaluation was usually obtained by specific laboratory tests on referral to various clinics and laboratories at University Hospital.

Results Source of Referral to the Genetics Clinic Of the referrals, 75 percent were made directly through the nursing staff at the health centers. Communication with the 15 families referred by themselves or friends showed that this occurred through family knowledge of public health nurse referral of other families. Therefore, the total direct and indirect influence of public health nurses in genetic referral in this group of 144 families is greater than 85 percent.

Parental Age, Family Size and Income As anticipated, more than 85 percent of the patients or parents of defective children seen were between the ages of 20 and 40. Most families seen had from 1 to 4 children with a median number for all 144 families of 2.3 children. There were almost twice as many families in the $5,000 to $10,000 annual income bracket as in each of the income groups below or above these amounts. Only 25 percent of the families had an income of greater than $10,000 annually. Subjective Reasons for Attending the Genetics Clinic Although 85 percent of the patients were referred by public health nurses, only 14 percent of the respondents considered recommendation by a health nurse to be their only reason for going to the clinic. In contrast, nearly 75 percent felt their reason for attending the genetics clinic was concern for their possible future children or the risk that a genetic defect might affect their children's children or both. Subjective Response to Genetic Services A large proportion of the families seen (73 percent) felt they had no other or were aware of

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no other resource for genetic services other than the newly established health center genetics clinics, and 94 percent of the families would or had already recommended the clinic to others. Approximately the same number (88 percent) felt that a regionally located genetics clinic greatly facilitated their use of these services. Approximately two thirds of the respondents felt they understood their or their child's problem better after counseling, but only one third felt they had learned where to get additional help for a defective child. Most families expressed a feeling that nurses and physicians were interested not only in the genetic problem but in them as persons. At the same time, most expressed the feeling that more follow-up visits to the genetics clinic would have been helpful.

Previous Counseling Of the 144 families seen, 75 percent had not been counseled previously. Of the 25 percent of families counseled previously, 60 percent were counseled by their family physician and 30 percent by a "specialist." Only 10 percent indicated previously being counseled by a geneticist. Of 36 families (25 percent of the total) who received genetic counseling before being seen in the health center genetics clinic, only 20 percent felt they had understood previous counseling to any degree.

Subjective Interpretation of Genetic Risks Table 2 depicts the genetic risks as provided by the counselor and the numerical recurrence risk as remembered by the patient. Earlier we mentioned that approximately 85 percent of clinic referrals were by public health nurses who had no significant background in genetics. As seen in Table 2, more than 75 percent of the families seen were obviously felt to have genetic problems by the counselor. Comparison of the data in Table 2 shows a reasonable agreement between recurrence risks given by the counselor and the numerical figure remembered by the patient. Of considerable interest is the patient's interpretation of genetic risks. The subjects were asked to interpret their risks as high, moderate, low and zero. This information was then objectively crossrelated to specific numerical recurrence risks as given by the counselor and as remembered by the patient. It should be stated parenthetically that we chose to consider autosomal recessive,

TABLE 2.-Patient Recollection of Counseled Genetic Risks Frequency Risk Given in Counseling Relative Absolute (Percent)

Value (Percent)

Zero .......

41 42 2 29 22

5

5

3.5

3

2.1

3

.. 2.1

144

100.0

144

100.0

....

100 ........

Not given TOTALS

...

...

28.5 29.2 1.3 20.1 15.3

23.5 32.6 0.8 20.8 16.7 3.5

34 47 1 30 24

1-5 ........ 5-10 ....... 25 ......... 50 .........

X-linked

Frequency Risk Remembered by Patient Relative Absolute (Percent)

TABLE 3.-Patient Interpretation of High Genetic Risk Recurrence Risk Given to Patienzt by Counselor (Percent) Zero

Zero .... 2 1-5 .. 2 25 .. 0 50 .. 1 X-linked .0

Specific Recurrent Risk Remembered by Patient (Percent) 50 X-linked 100 Totals 5-10 25 1-5

0 8

0 1

0

0

0

0

0

0

1 1 14 3

0

1 1 1 11 0

0 0 0 0 4

1 0 2 0 0

5 13 17 15 4

TABLE 4-Patient Interpretation of Moderate Genetic Risk Recurrence

Risk

Given to Patient by Counselor (Percent)

Zero

1. Zero 1-5 .. 0 0 5-10 . 25 .. 0 50 .. 0 X-linked .0

Specific Recurrent Risk Remembered by Patient (Percent) 50 X-linked 100 Totals 25 1-5 5-10

0 4 0

0 0 1

0 0 0

0 0 0

0

0 0 0

0 0 0

0 0 0

0

0

0

0

2 0

0 1

0 0

5

0

0 0

1 4 1

5 2 1

autosomal dominant and X-linked categories as "high risk." Multifactorial inheritance and recurrence risk for chromosomal abnormalities were considered to be "moderate" or "low risk." There were 18 persons who did not respond to this portion of the questionnaire (12.5 percent). In Table 3, we see the response of families/ patients who considered their genetic risk for recurrence of a particular abnormality to be high. There were two patients who were told that the recurrence risk was zero and who remembered a zero risk yet considered this a high risk. Also, there were patients who were told zero risk but remembered 25, 50 and 100 percent risks-and correctly considered these high. Of the 55 patients in this group (Table 3), approximately 15 percent considered a 1 to 5 percent risk high. It THE WESTERN JOURNAL OF MEDICINE

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GENETIC COUNSELING TABLE 5.-Patient Interpretation of Low Genetic Risk Specific Recurrence Risk Rememnbered by Patient (Percent)

Recurrence Risk

Given to Patient by Counselor (Percent)

Zero

1-5

25

Totals

Zero . 1-5 . 25 .

7 2 0

1 14 2 0

0 3 1 0

8 19 3 0

50.0

TABLE 6.-Patient Interpretation of No Genetic Risk Specific Recurrence Risk Remembered by Patient (Percent)

Recurrence Risk

Giv en to Patient by Counselor (Percent)

Zero

Zero ......... 15 1-5 ......... 3 25 ........... 1 50 ............ 1

1-5

25

Totals

0 3 0 1

0 0 0 1

15 6 1 3

TABLE 7.-Influence of Genetic Counseling on Subsequent Pregnancies Absolute Frequency

No influence .64 Felt reassured .30 No more children .29 Plan to adopt .7 No decision .14 TOTALS ..................... 144

Relative Frequency (Percent)

44.4 20.8 20.1 4.9 9.8 100.0

should be pointed out that young mothers who had children with 21 trisomy (Down's syndrome) in general were counseled that the recurrence risk was approximately 1 percent. The eight parents of children with Down's syndrome all correctly remembered a 1 percent recurrence risk but considered this high, and this accounts for virtually all of the families who considered a 1 to 5 percent risk high. As shown in Table 3 and throughout the entire study, there is a consistently excellent understanding of recurrence risks in X-linked abnormalities. Thus the family's interpretation of high or low recurrence risks for X-linked disorders was based on whether they considered the Xlinked defect to be severely destructive or not. Approximately 53 percent of the families described in Table 3 were told recurrence risks that were high (25 percent, 50 percent and X-linked), remembered the numerical advice correctly, and considered the risks high. At least 20 percent of the respondents in Table 3 remained confused either about the numerical recurrence risk or the significance of the recurrence risks. Of particular concern are the three families who were given 10

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zero or 25 percent risk, yet remembered 100 percent risk, and the one patient who was given a 50 percent recurrence risk but remembered a zero risk although considering that risk high. What seems clear is that for this group of patients, counseling has not been ideal and confusion remains for a significant number of families. Tables 4 and 5 summarize results from patients who considered their genetic risks either moderate or low. It is important to note that eight families (Table 4) who were counseled that the genetic risk was high (autosomal recessive, 5; dominant, 2; X-linked, 1) and understood the recurrence risk by its correct numerical value still considered the risk to be only moderate. The patient interpretation of a small genetic risk (Table 5) seems to be well-correlated with the numerical understanding of each risk. Three patients were advised of a 1 to 5 percent recurrence risk, remembered a 25 percent risk but interpreted the risk as being small. In Table 6 we see that 40 percent of the subjects who interpreted their genetic risks as zero were either counseled differently by the physiciangeneticist or correctly remembered the numerical risk but incorrectly interpreted this as no risk. Although a low recurrence risk may be considered as no risk at all by the patient, depending upon the nature of the genetic variation, results depicted in Table 6 again indicate that genetic counseling may not have been adequate in this group of subjects. Of respondents who were seen in only one counseling session, 26 percent incorrectly recalled recurrence risks as given by the counselor. Of the patients seen on two or more clinic visits, approximately 18 percent had inaccurate recall of recurrence risks. Therefore it would seem that improvement is needed in follow-up counseling and that, in most instances, more than a single genetic counseling session is required. From other data not reported here, patients and families express a strong opinion that more than one counseling session is highly desirable.

Influence of Genetic Counseling on Family Planning As shown in Table 7, approximately 45 percent of the families seen have been influenced in family planning after counseling (either reassured about risks, plan to adopt or have no additional children), and an approximately equal number felt no influence at all on their plans for more

GENETIC COUNSELING

children. Of the families who decided not to have additional children following genetic counseling (20.1 percent), 65 percent are following some method of contraception and 36 percent have had some form of sterilization. In the main, families who felt no influence by genetic counseling on their family planning had already decided to have no more children before counseling. There were a few families who planned more children in the face of high genetic risks. These decisions were made largely because of religious beliefs. Outcome of Subsequent Pregnancies Thirty-four pregnancies have occurred subsequent to genetic counseling. Fifteen were planned and resulted in normal children. Seventeen were unplanned but also resulted in normal children. Two pregnancies resulted in defective children. In one unplanned pregnancy, a child was born with cleft lip and palate. The only previous pregnancy for this couple produced a child who, during infancy, had skin lesions characteristic of chloasma. The couple had been advised that these skin lesions were considered to be nongenetic. There was no family history of cleft lip or palate. In a second family, a planned pregnancy resulted in a premature infant with respiratory distress syndrome and erythroblastosis fetalis. The infant died three weeks after birth. According to the results of the genetic counseling questionnaire submitted by these parents, they were aware of the Rh factor incompatibility and the genetic risks, but after counseling they had felt their risks were zero.

Discussion The difficulty in interpreting studies to evaluate genetic counseling results mostly from the fact that currently no criteria or standards exist for this kind of evaluation. Although several excellent reports on the subject of counseling'-'2 have appeared recently, all suffer from the same deficiency and, like this report, use experiences unique to their particular program. The problem of this lack of standardization becomes particularly acute with the increasing number of genetic counseling services available and the interest of medical students, as well 'as established health professionals, in genetic counseling as part of their career plans. This is also relevant to the increasing number of master's degree programs for training in genetic counseling. There can be no question that criteria are needed upon which

genetic counseling effectiveness can be ascertained. Our studies are not intended to answer any of these dilemmas and may well provide information useful only to our own genetic counseling program. On the other hand, several general comments can be made. There is no question that as a part of total medical care, genetic counseling clinics have more mobility and flexibility than other subspecialty services. A number of major medical centers have conducted regionalized genetic counseling clinics for several years (for example, Thomas Jefferson University;10 the University of Colorado Medical Center;" the University of California, San Francisco Medical Center12). These programs are successful to the extent that services are provided to a patient population who might otherwise find it difficult to obtain access to genetic services. Patient response is overwhelmingly positive to regional clinics for genetic counseling. The results in this report clearly show that with minimal training, health professionals without previous experience in genetic disease can readily learn to identify patients or families who might have a genetic disorder. Consequently, the referral mechanism for genetic counseling could attain a broader base without disturbing the primary physician-patient relationship. The results also show that regionalization of genetic clinics and utilization of public health nurses to identify genetic problems in families increases the effectiveness of consumer exposure to genetic counseling. Moreover, participation by public health nurses in genetic counseling services assures optimal opportunity for proper follow-up and reinforcement of counseling advice. Ascertaining the effectiveness of genetic counseling is considerably more difficult. The results reported here confirm the finding of Leonard and co-workers3 that the impact of a particular genetic disorder usually outweighs the numerical recurrence risks for many parents. For example, half of the families told that the recurrence risk for 21 trisomy was approximately 1 percent considered this to be a high risk. One might argue that simply telling a family that a recurrence risk exists might in some instances provide effective counseling. Approximately 54 percent of the families who interpreted their counseling as a high recurrence risk were actually given such figures by the counselor and correctly remembered the numerical THE WESTERN JOURNAL OF MEDICINE

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risk. Our results show precise and complete understanding of genetic counseling for 36 percent of subjects in the moderate risk category, 53 percent in the low risk category and 60 percent in the no risk category. Thus the overall average for precise and complete understanding is 50 percent. However, out of 144 respondents in this study, 18 did not respond to this portion of the questionnaire. If one concludes that a large portion of those 18 respondents did not have the correct interpretation or understanding of their counseling, then the positive correlation between what the genetic counselor told the subject and what was interpreted by the subject could be close to 48 percent. If one interprets these results as at least one measurement of effectiveness, then it means that no better than half of the families in this study had completely effective counseling as far as understanding is concerned. Approximately two thirds of the respondents (Table 7) felt that genetic counseling influenced plans for subsequent pregnancies. One might also argue that two thirds (those who were not influenced plus those who felt reassured) came to the counselor with their decisions about subsequent children already determined. This tends to support the concept that many families with genetic disorders intuitively make decisions about genetic risks and subsequent children long before they seek advice from a counselor. For such families the counselor simply provides a biologic explanation to support decisions already made. A similar conclusion was mentioned in a recent report by Hsia.9 If it is concluded that effective genetic counseling includes correct interpretation of counseling and use of the data in family planning, then we remain considerably short of our goal. However, our findings, which support those of Reynolds and co-workers8 and Hsia,9 suggest that family planning more often than not will be decided upon before counseling. On the other hand, a smaller but significant number of families will make decisions about future children based primarily on genetic counseling. For this group of parents, counseling becomes crucial. Thus it appears that improving understanding of counseling is a worthy goal. Repeat clinic visits to review genetic advice given previously are helpful and are nearly unanimously requested by patients. However, our studies did not show a significant improvement in understanding of counseling relative to the 12

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number of clinic visits. As did Reynolds and coworkers,8 we routinely send a typed summary of the genetic counseling session to each family. All families felt this was important, but again we have not been able to document that access to a written summary enhances the comprehension of genetic counseling. It may be that long-term follow-up with continuous reinforcement of counseling may be crucial to effective comprehension of genetic risks. We have instituted such a program through public health nurses and the Department of Public Health. Evaluation of these results is in progress. Another appropriate alternative would be through private family physicians. It might be advantageous to a patient if his or her physician were thoroughly familiar with genetics, at least as related to the physician's area of clinical interest. It may well be an additional asset to the family for follow-up counseling to come from the health team member (nurse, physician and so forth) who will follow that family or patient for an extended time. This type of approach to genetic service is certainly possible. Skill in genetics and genetic counseling could be made part of postgraduate specialty training as, for example, they are parts of the requirements for a perinatal medicine subspecialty in obstetrics and gynecology. It would seem reasonable that in the future, primary genetic counseling might be the responsibility of referring physicians, with medical geneticists filling a role as special consultants in counseling. Follow-up review or reinforcement of counseling could then be provided by a referring physician or, in some instances, by a consulting medical genetics team. REFERENCES 1. Genetic counselling-Third report of the WHO expert committee on human genetics. WHO Tech Rep Ser No. 416:5-23, 1969 2. Carter CO, Evans KA, Fraser Roberts JA, et al: Genetic clinic-A follow-up. Lancet 1:281-285, Feb 6, 1971 3. Leonard CO, Chase GA, Childs B: Genetic counseling: A consumers' view. N Engl J Med 287:433-439, Aug 31, 1972 4. Sultz HA, Schlesinger ER, Feldman J: An epidemiologic justification for genetic counseling in family planning. Am J Public Health 62:1489-1492, Nov 1972 5. Kivowitz J, Keirn W: A genetics counseling clinic in a mental health setting. Hosp Community Psychiatry 24:156-158, Mar 1973 6. Pearn JH: Patients' subjective interpretation of risks offered in genetic counselling. J Med Genet 10:129-134, Jun 1973 7. Emery AEH, Watt MS, Clack E: Social effects of genetic counselling. Br Med J 1:724-726, Mar 24, 1973 8. Reynolds BD, Puck MH, Robinson A: Genetic counseling: An appraisal. Clin Genet 5:177-187, 1974 9. Hsia YE: Parental reactions to genetics counseling. Contemp Obstet Gynecol 4:99-106, Jul 1974 10. Jackson LG, Peris LA, Cowchock FS, et al: Center-satellite programs for genetic services: The Philadelphia experience. Am J Hum Genet 26:44A, 1974 11. Riccardi VM, Lessick M, Lamphier A, et al: Regional Genetic Counseling Program (RGCP). Am J Hum Genet 25:64A, 1973 12. Epstein CJ, Erickson RP, Hall BD, et al: The centersatellite system for the wide-scale distribution of genetic counseling services. Am J Hum Genet 27:322-332, 1975