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Screening Out Controversy: Human Genetics, Emerging Techniques of Diagnosis, and the Origins of the Social Issues Committee of the American Society of Human Genetics, 1964–1973

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Abstract

In the years following World War II, and increasingly during the 1960s and 1970s, professional scientific societies developed internal sub-committees to address the social implications of their scientific expertise (Moore, Disrupting Science: Social Movements, American Scientists, and the Politics of the Military, 19451975. Princeton: Princeton University Press, 2008). This article explores the early years of one such committee, the American Society of Human Genetics’ “Social Issues Committee,” founded in 1967. Although the committee’s name might suggest it was founded to increase the ASHG’s public and policy engagement, exploration of the committee’s early years reveals a more complicated reality. Affronted by legislators’ recent unwillingness to seek the expert advice of human geneticists before adopting widespread neonatal screening programs for phenylketonuria (PKU), and feeling pressed to establish their relevance in an increasingly resource-scarce funding environment, committee members sought to increase the discipline’s expert authority. Painfully aware of controversy over abortion rights and haunted by the taint of the discipline’s eugenic past, however, the committee proceeded with great caution. Seeking to harness interest in and assert professional control over emerging techniques of genetic diagnosis, the committee strove to protect the society’s image by relegating ethical and policy questions about their use to the individual consciences of member scientists. It was not until 1973, after the committee’s modest success in organizing support for a retrospective public health study of PKU screening and following the legalization of abortion on demand, that the committee decided to take a more publicly engaged stance.

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References

  • Appel, Toby. 2000. Shaping Biology: The National Science Foundation and American Biological Research. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Balogh, Brian. 1991. Chain Reaction: Expert Debate and Public Participation in American Commercial Nuclear Power. New York: Cambridge University Press.

    Book  Google Scholar 

  • Beatty, John. 1987. “Weighing Risks: The Stalemate in the Classical/Balance Controversy.” Journal of the History of Biology 20: 289–319.

    Article  Google Scholar 

  • Bimber, Bruce. 1996. The Politics of Expertise in Congress: The Rise and Fall of the Office of Technology Assessment. Albany: State University of New York Press.

    Google Scholar 

  • Carter, C.O. 1970. “Practical Aspects of Early Diagnosis.” Maureen Harris (ed.), Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. Washington: U.S. Government Printing Office, pp. 17–22.

    Google Scholar 

  • Childs, Barton. 1972. “Genetic Variation and Disease.” Genetics and the Perinatal Patient: Scientific, Clinical and Ethical Consideration. Mead Johnson Symposium, pp. 39–43.

  • Comfort, Nathaniel. 2012. The Science of Human Perfection: How Genes Became the Heart of American Medicine. New Haven: Yale University Press.

    Book  Google Scholar 

  • Committee for the Study of Inborn Errors of Metabolism. 1975. Genetic Screening: Programs, Principles, and Research. Washington, D.C.: National Academies of Science.

    Google Scholar 

  • Committee on Research in the Life Sciences. 1968. Biology and the Future of Man. New York: Oxford University Press.

    Google Scholar 

  • Condliffe, Peter and Callahan, Daniel. 1973. “Preface.” Bruce Hilton, et al. (eds.), Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. New York: Plenum Press, pp. ix–xi.

    Google Scholar 

  • Conniff, James. 1967. “The World of the Unborn.” New York Times Magazine, January 8, p. 40.

  • Cowan, Ruth Schwartz. 2008. Heredity and Hope: The Case for Genetic Screening. Cambridge: Harvard University Press.

    Book  Google Scholar 

  • Crow, James F. 1969. “Genetic Theories and Influences: Comments on the Value of Diversity.” Harvard Educational Review 39: 153–161.

    Article  Google Scholar 

  • Crow, James F. 1973. “Population Perspective.” Bruce Hilton, et al. (eds.), Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. New York:Plenum Press, pp. 73–80.

    Google Scholar 

  • Dietrich, Michael R. 1994. “The Origins of the Neutral Theory of Molecular Evolution.” Journal of the History of Biology 27: 21–59.

    Article  Google Scholar 

  • Dietrich, Michael R. 2006. “From Molecules to Mendel: A Brief History of Evolutionary Genetics.” Charles W. Fox (ed.), Evolutionary Genetics. New York: Oxford University Press.

    Google Scholar 

  • Dobzhansky, Theodosius. 1966. “On Genetic Aspects of Human Evolution.” James F. Crow and James V. Neel (eds.), Proceedings of the Third International Congress of Human Genetics, 5–10 September 1966. Chicago: University of Chicago Press, pp. 361–365.

    Google Scholar 

  • Duster, Troy. 1990. Backdoor to Eugenics. New York: Routledge.

    Google Scholar 

  • Epstein, Charles J. 2002. “Allan Award Lecture: From Down Syndrome to the ‘Human’ in ‘Human Genetics’.” American Journal of Human Genetics 70: 300–313.

    Article  Google Scholar 

  • Ezrahi, Yaron. 1990. The Descent of Icarus: Science and the Transformation of Contemporary Democracy. Cambridge: Harvard University Press.

    Google Scholar 

  • Fleming, Nic. 2014. “J’Accuse.” New Scientist 222: 44–47.

    Article  Google Scholar 

  • Fraser, F. Clarke. 1973. “Study of Counseling Practices.” Bruce Hilton, et al. (eds.), Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. New York: Plenum Press, pp. 7–13.

    Google Scholar 

  • Frickel, Scott. 2004. Chemical Consequences: Environmental Mutagens, Scientist Activism, and the Rise of Genetic Toxicology. New Brunswick: Rutgers University Press.

    Google Scholar 

  • Geiger, Roger L. 1993. Research and Relevant Knowledge: American Research Universities Since World War II. New York: Oxford University Press.

    Google Scholar 

  • Gordin, Michael D. 2012. “How Lysenkoism Became Pseudoscience: Dobzhansky to Velikovsky.” Journal of the History of Biology 45: 443–468.

    Article  Google Scholar 

  • Hall, Robert E. (ed.). 1970. Abortion in a Changing World, II vols. New York: Columbia University Press.

    Google Scholar 

  • Harris, Maureen (ed.). 1970. Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. Washington, D.C.:U.S. Government Printing Office.

    Google Scholar 

  • Hilgartner, Stephen. 2000. Science on Stage: Expert Advice as Public Drama. Stanford: Stanford University Press.

    Google Scholar 

  • Hilton, Bruce et al. (eds.). 1973. Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. New York: Plenum Press.

  • Hirschhorn, Kurt and Mastrejaun, Andrea. 2002. Kurt Hirschhorn Interview with Andrea Mastrejaun, August 7, 2002. New York: Johns Hopkins Oral History of Human Genetics Project, http://ohgp.pendari.com.

  • Hixson, Joseph. 1967. “Forecasts from the Womb.” McCall’s, February 1967, p. 60.

  • Hsia, David Yi Yung. 1970. “Detection of Heterozygotes.” Maureen Harris (ed.), Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. Washington: U.S. Government Printing Office, pp. 105–120.

    Google Scholar 

  • Jarloslovsky, Rich. 1972. “Diverse Groups Criticize Shockley’s Theories.” The Stanford Daily, March 1, p. 161.

  • Jasanoff, Shiela. 1990. The Fifth Branch: Science Advisors as Policymakers. Cambridge: Harvard University Press.

    Google Scholar 

  • Jasanoff, Shiela. 1997. Science at the Bar: Law, Science, and Technology in Twentieth Century America. Cambridge: Harvard University Press.

    Google Scholar 

  • Kevles, Daniel J. 1986. In the Name of Eugenics: Genetics and the Uses of Human Heredity. Berkeley: University of California Press.

    Google Scholar 

  • Kinchy, Abby J. 2006. “On the Borders of Post-War Ecology: Struggles over the Ecological Society of America’s Preservation Committee, 1917–1946.” Science as Culture 15: 23–44.

    Article  Google Scholar 

  • Layton, Edwin T. 1986. The Revolt of the Engineers: Social Responsibility and the American Engineering Profession. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Lederberg, Joshua et al. 1966. “Letter to the Editor.” Stanford MD, February 14.

  • Lederberg, Joshua. 1967. “A Geneticist Looks at Contraception and Abortion.” Annals of Internal Medicine 67: 25–67.

    Article  Google Scholar 

  • Lederberg, Joshua. 1968. “The Risky Pregnancy.” San Francisco Chronicle, October 13, p. 2.

  • Lederberg, Joshua. 1971. “Technology as Diabolism.” In Dimensions Symposium: Human Values in a Technological Society, Winter 1971. New York: Union of American Hebrew Congregants.

  • Lejeune, Jerome. 1970. “Allan Award Lecture: On the Nature of Men.” American Journal of Human Genetics 22: 121–128.

    Google Scholar 

  • Lindee, Susan. 1994. Suffering Made Real: American Science and the Survivors at Hiroshima. Chicago: University of Chicago Press.

    Book  Google Scholar 

  • Lindee, Susan. 2005. Moments of Truth in Genetic Medicine. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Luker, Kristin. 1984. Abortion and the Politics of Motherhood. Berkeley: University of California Press.

    Google Scholar 

  • Maasen, Sabine and Weingart, Peter. 2005. “What’s New in Scientific Advice to Politics?’ Sabine Maasen and Peter Weingart (eds.), Democratization of Expertise? Exploring Novel Forms of Scientific Advice in Political Decision-Making. Dordrecht: Springer, pp. 1–20.

    Google Scholar 

  • Johnson, Mead. 1972. Genetics and the Perinatal Patient: Scientific, Clinical and Ethical Consideration. Evansville, IN: Mead Johnson & Co.

    Google Scholar 

  • Miller, Orlando J. 1970. “An Overview of Problems Arising from Amniocentesis.” Maureen Harris (ed.), Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. Washington: U.S. Government Printing Office, pp. 23–30.

    Google Scholar 

  • Mohr, Jan. 1967. “Genetic Counseling.” James V. Neel and James Crow (eds.), Proceedings of the Third International Congress of Human Genetics. Chicago: University of Chicago Press, pp. 37–43.

  • Moore, Kelly Ann. 1996. “Organizing Integrity: American Science and the Creation of Public Interest Science Organizations, 1955–1975.” American Journal of Sociology 101: 1592–1627.

    Article  Google Scholar 

  • Moore, Kelly Ann. 2008. Disrupting Science: Social Movements, American Scientists, and the Politics of the Military, 1945–1975. Princeton: Princeton University Press.

    Google Scholar 

  • Morison, Robert. 1970. “Chairman’s Introduction.” Maureen Harris (ed.), Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. Washington: U.S. Government Printing Office, pp. 7–16.

    Google Scholar 

  • Motulsky, Arno G., Fraser, George R., and Felsenstein, Joseph. 1971. “Public Health and Long-Term Genetic Implications of Intrauterine Diagnosis and Selective Abortion.” Daniel Bergsma, Arno G. Motulsky, and Joseph Sitter (eds.), Symposium on Intrauterine Diagnosis. New York: March of Dimes National Foundation, pp. 22–32.

    Google Scholar 

  • Motulsky, Arno G. 1973. “The Significance of Genetic Disease.” Bruce Hilton, et al. (eds.), Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. New York: Plenum Press, pp. 59–66.

    Google Scholar 

  • Muller, H. J. 1949. “Progress and Prospects in Human Genetics.” American Journal of Human Genetics 1: 1–18.

    Google Scholar 

  • Muller, H. J. 1950. “Our Load of Mutations.” American Journal of Human Genetics 2: 111–176.

    Google Scholar 

  • National Academy of Science. 1967. “Racial Studies: Academy States Position on Call for New Research.” Science 158: 892–895.

    Article  Google Scholar 

  • National Registry for Amniocentesis Study Group. 1976. “Midtrimester Amniocentesis for Prenatal Diagnosis: Safety and Accuracy.” Journal of the American Medical Association 236: 1471–1476.

    Article  Google Scholar 

  • Neel, James V. 1970. “Ethical Issues Resulting from Prenatal Diagnosis.” Maureen Harris (ed.), Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, A Symposium Sponsored by the John E. Fogarty International Center for Advanced Study in the Health Sciences, National Institutes of Health Bethesda, MD, 18–19 May 1970. Washington:U.S. Government Printing Office, pp. 219–229.

    Google Scholar 

  • Neel, James V. 1974. “Our Twenty-Fifth.” American Journal of Human Genetics 26: 136–144.

    Google Scholar 

  • Nelkin, Dorothy. 1977. “Scientist and Professional Responsibiliy: The Experience of American Ecologists.” Social Studies of Science 7: 75–95.

    Article  Google Scholar 

  • Paul, Diane. 1987. “’Our Load of Mutations’ Revisited.” Journal of the History of Biology 20: 321–335.

    Article  Google Scholar 

  • Paul, Diane and Edelson, Paul J. 1998. “The Struggle Over Metabolic Screening.” Soraya de Chadaravian and Harmke Kamminga (eds.), Molecularizing Biology and Medicine: New Practices and Alliances, 1910s–1970s. Amsterdam: Harwood Academic, pp. 190–207.

    Google Scholar 

  • Paul, Diane and Brosco, Jeffrey P. 2013. The PKU Paradox: A Short History of a Genetic Disease. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Reagan, Leslie. 1997. When Abortion Was a Crime: Women, Medicine, and Law in the United States, 1867–1973. Berkeley: University of California Press.

    Google Scholar 

  • Reagan, Leslie. 2010. Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America. Berkeley: University of California Press.

    Google Scholar 

  • Rothman, Philip. 1991. Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decisionmaking. New York: Basic Books.

    Google Scholar 

  • Schmeck, Harold M. 1966. “Nobel Winner Urges Research on Racial Heredity.” New York Times, October 15.

  • Smith, Bruce L. 1990. American Science Policy Since World War II. Washington: The Brookings Institution.

    Google Scholar 

  • Stern, Alexandra. 2012. Telling Genes: The Story of Genetic Counseling in America. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Stine, Jeffrey K. 1986. A History of Science Policy in the United States, 1940–1985. Washington: U.S. Government Printing Office.

    Google Scholar 

  • Wailoo, Keith. 1997. Drawing Blood: Technology and Disease Identity in Twentieth Century America. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Wailoo, Keith. 2001. Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health. Chapel Hill: University of North Carolina Press.

    Google Scholar 

  • Wang, Jessica. 1999. American Science in an Age of Anxiety: Scientists, Anticommunism, and the Cold War. Chapel Hill: University of North Carolina Press.

    Google Scholar 

  • Wolfe, Audra J. 2010. “What Does It Mean to Go Public? The American Response to Lysenkoism Reconsidered.” Historical Studies in the Natural Sciences 40: 48–78.

    Article  Google Scholar 

  • Wright, David. 2011. Downs: The History of a Disability. New York: Oxford University Press.

    Google Scholar 

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Mitchell, M.X. Screening Out Controversy: Human Genetics, Emerging Techniques of Diagnosis, and the Origins of the Social Issues Committee of the American Society of Human Genetics, 1964–1973. J Hist Biol 50, 425–456 (2017). https://doi.org/10.1007/s10739-016-9437-8

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