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…Let No One Split Asunder: Controversy In Human Genetic Engineering

Published online by Cambridge University Press:  17 May 2016

Stanley S. Robin  and
Gerald E. Markle
Stanley S. Robin
Affiliation:
Department of Sociology, Western Michigan University, Kalamazoo, Michigan 49008
Gerald E. Markle
Affiliation:
Department of Sociology, Western Michigan University, Kalamazoo, Michigan 49008
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Abstract

In 1980 the first recombinant genetic engineering experiments on humans were performed. These experiments sparked a major controversy, international in scope and potentially profound in its implications for genetic science. We develop four perspectives—substantive, network, organizational, and societal—from which science can be seen as a process having differing social implication and meaning. The research and controversy are discussed with attention to the conflicts and their resolutions from each perspective and among them. Taken together, the four perspectives are used as a single basis for understanding the social processes involved in this case study and the more general workings of science.

Type
Articles and Commentaries
Information
Politics and the Life Sciences , Volume 6 , Issue 1 , August 1987 , pp. 3 - 12
Copyright
Copyright © Association for Politics and the Life Sciences 

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References

Notes

1. Thalassemia is a generic medical label for a family of inherited blood diseases in which a globin protein is missing entirely or is produced in diminished amounts. In thalassemia minor, where the gene is inherited from only one parent, the disease is manifested as a mild anemia. Thalassemia major, in which the gene is fully expressed and inherited from both parents, is fatal, usually by late adolescence or early adulthood. In the United States, thalassemia major is quite rare—fewer than 1,000 people are affected. Among Mediterranean populations, however, some 5 of every 1,000 newborns inherit the condition.Google Scholar

2. The regulation of human genetic research has a venerable and two-pronged history. In the United States the general protection of human subjects was initiated by the Surgeon General in February 1966, enhanced by law and Public Health Service regulation in 1974 and relaxed in January 1981. The control of recombinant DNA research began in June of 1973, when molecular biologists at the Gordon Conference of Nucleic Acids voted to send a letter of concern about the safety of recombinant research to the National Academy of Sciences and, further, to publish the letter in Science. This stimulated a series of events leading to the Asilomar Conference early in 1975. The report of that conference, specifying potential hazards of recombinant research, lead to a National Institute of Health regulation in 1976. Thus it was that in 1980 mechanisms were in place at UCLA to grant or withhold permission to conduct rDNA research upon human beings. Given that only one-half of a decade elapsed between Asilomar and this first human genetic engineering experiment, the “historical” literature is remarkably rich. Weiner and Goodell have collected an extensive oral history about rDNA as part of the Massachusetts Institute of Technology's Oral History Program, while books such as James D. Watson and John Tooze's The DNA Story (1981) have made rDNA documents and the detailed chronology conveniently available.Google Scholar

3. Much of the material in this chronology and the subsequent analysis were gathered via interview. All interviews were conducted jointly by the authors by telephone, except for the interview with Winston Salser which was conducted in person, in Los Angeles, by one of the investigators (S.S.R.). All interviews were recorded with the permission of the subjects. The transcriptions are maintained by the authors.Google Scholar

4. Dr. Thomas Maniatus (personal interview, February 8, 1982), who had supplied Cline with the experimental rDNA, thought that Paul Jacobs had received his “tip” from “somewhere in NIH.” Jacobs, of course, does not corroborate this.Google Scholar

5. See the issues of October 17, 1980; October 24, 1980; October 31, 1980; and April 3, 1981.Google Scholar

6. There is some suggestion that Cline deliberately deceived the Israeli Committee. On the other hand, Cline maintains that the difference between treatment and protocol was more of a technical detail than the verbal articulation represents and that the discrepancy was not perceived by the experimenter, at the time of treatmentGoogle Scholar

7. It should be noted that, while this was the first public disclosure, NIH had initiated pointed inquiries a month earlier. On September 8, 1980 Dr. Charles R. McCarthy, Director of the NIH Office for Protection from Research Risks, and later a member of the NIH Ad Hoc Committee wrote to Chancellor Young at UCLA. The letter stated that his office, “… has received information that Dr. Martin J. Cline of… [UCLA] Department of Medicine, might have been involved in some research activities without satisfying Department of Health and Human Services Regulations for the Protection of Human Research Services.” In the same letter he asked for a report addressing questions such as: “Has Dr. Cline been associated with research which involved inserting DNA into human beings? If so, was the material recombinant DNA?… Was such research reviewed and approved by an institutional review board?…” This inquiry suggests that specific information had reached NIH and that public disclosure of the research and the irregularities which deepened the controversy may have been inevitable. Although Cline's research was conducted with funds from UCLA, NIH funded the research that produced the recombinant DNA material used in the treatments. NIH justified their investigation and subsequent action by quoting from their guidelines which state “[their guidelines are]… applicable to all recombinant DNA research within the United States or its territories which is conducted by recombinant DNA research from NIH. The guidelines are also applicable to projects done abroad if they are supported by NIH funds.”Google Scholar

8. Although the first two recommendations could be seen as emphasizing normal review procedures, a less benign view would have NIH conducting its own human subjects and recombinant reviews for future Cline proposals rather than merely accepting reviews conducted at the sponsoring institutions. As might be anticipated, there is disagreement on the degree of severity and the appropriateness of these recommendations.Google Scholar

9. This point draws heavily fromKolata, Gina (1981), “Thalassemias: Models of Genetic Diseases,” Science 210: 300–302.CrossRefGoogle Scholar

10. For a review of the scope of institutional regulation of rDNA, seeKrimsky, Sheldon and Ozonoff, David, “Recombinant DNA Research: The Scope and Limits of Regulation,” American Journal of Public Health Vol. 69, 1252–1259.CrossRefGoogle Scholar

11. Quoted inWade, Nicholas, “UCLA Gene Therapy Racked by Friendly Fire,” Science Vol. 210, 590–592. One and one-half years later (February 12, 1982) we asked Axel if the passage of time altered his feelings about that quote; he replied “no.”Google Scholar

12. In their book, Research on Human Subjects: Problems of Social Control in Medical Experimentation, Barber, Bernard et al. (New York: Russell Sage Foundation, 1973, p. 59) term this difference, “the dilemma of science and therapy.”Google Scholar

13. We thank Charles Weiner and Allan Mazur for helping us develop this point.Google Scholar

14. This activity culminated in “Splicing Genes: A Report on the Ethical and Social Implications of Genetic Engineering,” The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, June 10, 1980 (rough draft).Google Scholar

15. SeeGoodfield, June, Science and the Media (Washington, D. C.: American Association for the Advancement of Science, 1981, 43–51) for a discussion of how the media reported the rDNA story. In a perceptive article, Rae Goodell (The Gene Craze,' Columbia Journalism Review November-December, 1980, 41–51) argues that after a few critical stories, the press became enamored with the industrial aspect of rDNA and has consequently followed the “agenda of the scientific community” rather than developing the story in a more balanced manner.Google Scholar