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Journal of Genetic Counseling, Vol. 6, No. 2, 1997 The Historical Perspective Eugenics and Nondirectiveness in Genetic Counseling Robert G. Resta1-2 Why do genetic counselors advocate nondirectiveness? Most authors claim that nondirectiveness developed as a reaction to the abuses of the Nazi government and to the aggressive population improvement strategies of traditional eugenicists like Charles Davenport. After World War II, ge- neticists felt that they could escape the ethical pitfalls of their eugenic predecessors by adhering to the principles of patient autonomy and non- directiveness (Fine, 1993; Kessler, 1992; Michie et al., 1997; White, 1997). Is it accurate to claim that the rise of nondirectiveness signaled a gen- eral renunciation of eugenic goals? As historian of genetics Diane Paul has pointed out, a closer look at what geneticists were saying during the 1950s reveals a complex answer to this question (Paul, 1995). Much of what fol- lows in this essay draws on Paul's research. Although physicians have long been interested in hereditary diseases, genetics as a clinical specialty developed in the decades after World War II. The term "genetic counseling" was coined by Sheldon Reed in 1947 (Reed, 1955). By 1951, ten genetic counseling centers, or "heredity coun- seling clinics," had been established in the United States and were staffed by well-known geneticists such as C. Nash Herndon, Charles W. Cotterman, Clarence Oliver, William Allan, F. E. Stephens, James Neel, Lee Dice, Franz Kallman, Sheldon Reed, and Harold Falls (Dice, 1952a; Reed, 1975). Much like today's genetics clinics, physicians at the heredity clinics met with patients who had a history of genetic diseases in their families or with couples who had recently delivered children with serious congenital defects. Recognizing the complexity of the reproductive decisions faced by these families and anxious to avoid the taint of mandatory eugenic programs, 1 Center For Perinatal Studies, Swedish Medical Center, Seattle, Washington. 2Correspondence should be directed to Robert Resta, Perinatal Medicine, Swedish Medical Center, 747 Braodway, Seattle, Washington 98122. 255 1059-7700/97/0600-0255$12.50/l © 1997 National Society of Genetic Counselor, Inc.

Eugenics and Nondirectiveness in Genetic Counseling

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Page 1: Eugenics and Nondirectiveness in Genetic Counseling

Journal of Genetic Counseling, Vol. 6, No. 2, 1997

The Historical Perspective

Eugenics and Nondirectiveness in GeneticCounseling

Robert G. Resta1-2

Why do genetic counselors advocate nondirectiveness? Most authorsclaim that nondirectiveness developed as a reaction to the abuses of theNazi government and to the aggressive population improvement strategiesof traditional eugenicists like Charles Davenport. After World War II, ge-neticists felt that they could escape the ethical pitfalls of their eugenicpredecessors by adhering to the principles of patient autonomy and non-directiveness (Fine, 1993; Kessler, 1992; Michie et al., 1997; White, 1997).

Is it accurate to claim that the rise of nondirectiveness signaled a gen-eral renunciation of eugenic goals? As historian of genetics Diane Paul haspointed out, a closer look at what geneticists were saying during the 1950sreveals a complex answer to this question (Paul, 1995). Much of what fol-lows in this essay draws on Paul's research.

Although physicians have long been interested in hereditary diseases,genetics as a clinical specialty developed in the decades after World WarII. The term "genetic counseling" was coined by Sheldon Reed in 1947(Reed, 1955). By 1951, ten genetic counseling centers, or "heredity coun-seling clinics," had been established in the United States and were staffedby well-known geneticists such as C. Nash Herndon, Charles W. Cotterman,Clarence Oliver, William Allan, F. E. Stephens, James Neel, Lee Dice,Franz Kallman, Sheldon Reed, and Harold Falls (Dice, 1952a; Reed, 1975).

Much like today's genetics clinics, physicians at the heredity clinics metwith patients who had a history of genetic diseases in their families or withcouples who had recently delivered children with serious congenital defects.Recognizing the complexity of the reproductive decisions faced by thesefamilies and anxious to avoid the taint of mandatory eugenic programs,

1 Center For Perinatal Studies, Swedish Medical Center, Seattle, Washington.2Correspondence should be directed to Robert Resta, Perinatal Medicine, Swedish MedicalCenter, 747 Braodway, Seattle, Washington 98122.

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1059-7700/97/0600-0255$12.50/l © 1997 National Society of Genetic Counselor, Inc.

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many clinical geneticists advocated nondirective counseling. The followingexcerpts clearly articulate their nondirective philosophy:

Parents should make their own decisions after they have all the facts possible.(Oliver, 1953, p.343)

We try to explain thoroughly what the genetic situation is but the decision mustbe a personal one between the husband and wife, and theirs alone. (Reed, 1955,p.14)In no case, however, should the geneticist presume to tell a couple whether or notthey should have a child. (Dice, 1952a, p.5)

In the practice of genetic counseling, it is our policy to inform a responsible memberof any family with a counseling problem of all the facts at our disposal bearing onthe issue. However, with rare exceptions, we do not attempt to pass a judgment asto the advisability of parenthood. (Neel and Schull, 1954, p. 308)

Yet at the same time that they were advocating patient self-determi-nation, many geneticists also openly supported eugenics. In fact, five of thefirst six presidents of the American Society of Human Genetics served onthe board of the American Eugenics Society during their presidencies (Paul,1995). The importance of eugenics to geneticists during the 1950s is furtherillustrated by these statements made by the same "nondirective" geneticistspreviously cited:

A geneticist should prevail upon some persons to have at least their share of chil-dren as well as to show a black picture to those with the potentiality of producingchildren with undesirable traits. (Oliver, 1952, p.31)

If our observation is generally correct, that people of normal mentality will behavein the way that seems correct to society as a whole, then an important corollaryfollows. It could be stated as a principle that the mentally sound will voluntarilycarry out a eugenics program which is acceptable to society if counseling in geneticsis available to them. (Reed, 1952, p.43)

We must give due concern to the possibility of eliminating, or, perhaps, of perpetu-ating, undesirable or desirable genes. We must not only be concerned with theparticular family concerned, but also with whether or not harmful heredity may becontinued or spread in our population. (Dice, 1952b, p.346)

Let us consider a hypothetical situation concerned with simple recessive inheritance.Consider two families, in one of which the parents are, by all standards, superiorand in which the only child has amaurotic idiocy, and another in which parents oflow intelligence and physical vigor, and there are three children, one of whom hasthe condition. Although in each family the probability that another child will beaffected is one in four, most geneticists would agree that, from the standpoint ofadvisability of future reproduction, the two families present quite different prob-lems. (Neel and Shull, 1954, pp.316-317)

Clearly many geneticists who waved the banner of nondirectivenesscontinued to champion eugenics. Although they criticized eugenic programsthat were based on racism and coercion, geneticists still felt that eugenicgoals were compatible with the goals of genetic counseling. Nondirective-ness was a reaction to the methodology of eugenics, not its principles.

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In the context of this history, where do master's level genetic coun-selors fit? Contemporary genetic counselors trace few of their professionaland ethical roots directly to the work of Oliver, Dice, Neel, and other earlyclinical geneticists. Genetic counselors specialize in helping patients andtheir families understand and cope with the medical and psychosocial im-plications of genetic diseases rather than in the diagnosis, treatment, andprevention of genetic diseases. The counseling theories of Carl Rogers, notSheldon Reed, form the basis of today's genetic counseling.

Can genetic counselors claim that by advocating nondirectiveness theycan remove eugenic connotations from their work? I argue that the answeris no, for several reasons.

First, genetic counselors cannot extricate themselves from the eugenicsquagmire simply by claiming a different professional lineage than clinicalgeneticists. Although Carl Rogers' counseling techniques may have influ-enced genetic counselors, Rogers was not a genetic counselor and he playedno direct role in the development of the profession. Rogers did not developclient-centered therapy as a response to eugenics; eugenics was irrelevantto Rogers' theories.

Second, even though genetic counselors specialize in the psychosocialeffects of genetic disease, they cannot claim that clinicians like Reed, Shull,and Dice have had little influence on the genetic counseling profession.Virtually all genetic counselors work in clinics that are supervised by clinicalgeneticists who can dictate the goals and philosophies of the clinics andcontrol the employment of genetic counselors. Of course, those clinical ge-neticists trace their history directly to the hereditary clinics of the 1950s.Genetic counseling is so closely interwoven with clinical genetics that it canbe difficult to decide where one profession begins and the other ends. Infact, clinical geneticists were exploring emotional and psychological impli-cations of genetic counseling several years before the establishment of thefirst genetic counseling training program (Tips et al., 1962; Tips and Lynch,1963).

The reasons why genetic counselors support nondirectiveness are com-plex, and likely influenced by social factors such as the patients' rightsmovement, the controversy over abortion, the women's rights movement,and the socioeconomic background of genetic counselors. However, it isinaccurate to claim that nondirectiveness developed specifically as a wayto avoid eugenic connotations. Eugenics and nondirectiveness have longcoexisted without ethical contradiction in the minds of the physicians whoshaped the philosophy and goals of clinical genetics. Genetic counselorsmay debate the role of nondirectiveness in patient care, but they cannotuse nondirectiveness to escape the specter of eugenics.

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REFERENCES

Dice LR (1952a) Heredity clinics: Their value for public service and research. Am J HumGenet 4:1-13.

Dice LR (1952b) Concluding remarks, a panel discussion: Genetic counseling. Am J HumGenet 4:332-346.

Fine B (1993) The evolution of nondirectiveness in genetic counseling and implications ofthe Human Genome Project. In: Bartels D, LeRoy B, Caplan A (eds) Prescribing OurFuture: Ethical Challenges in Genetic Counseling. Hawthorne, NY: Aldine de Gruyter.

Kessler S (1992) Psychological aspects of genetic counseling. VII. Thoughts on directiveness.J Genet Counsel 1:9-17.

Michie S, Bron F, Bobrow M, Marteau TM (1997) Nondirectiveness in genetic counseling:an empirical study. Am J Hum Genet 60:40-47.

Neel JV, Schull WJ (1954) Human Heredity. Chicago: University of Chicago Press.Oliver CP (1952) Human Genetics program at the University of Texas. Eugenic News 37:25-31.Oliver CP (1953) Statement, A panel discussion: Genetic counseling. Am J Hum Genet

4:339-343.Paul DB (1995) Controlling Human Heredity 1865 to the Present. New Jersey: Humanities PressReed S (1952) Heredity counseling and research. Eugenic News 37:41-46.Reed S (1955) Counseling in Medical Genetics. Philadelphia: W.B. Saunders.Reed S (1975) A short history of genetic counseling. Sod Biol 21:332-339.Tips RL, Lynch HT (1963) The impact of genetic counseling upon the family milieu. J Am

Med Assoc 184:183-186.Tips RL, Meyer DL, Perkins AL (1962) The dynamics of genetic counseling. Am J Dis Child

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