Ethical, Legal, and Social Issues Bibliography Publications Prior to 1995 This edition of the DOE ELSI Bibliography provides a resource for identifying publications prior to 1995 on the major topics related to the ethical, legal, and social issues (ELSI) surrounding the availability of personal genetic information. There are 6516 records, two-thirds of which are books and articles in the academic and professional literature. The remaining entries are news articles, mostly from major newspapers and science journals.1 1. Aaltonen, Lauri A.; Peltomaki, Paivi; Leach, Fredrick S.; Sistonen, Pertti; Pylkkanen, Lea; et al, "Clues to the Pathogenesis of Familial Colorectal Cancer," Science. 1993 May 7; 260: 812-816. Keywords: science, linkage, disorder, cancer 2. Aaronson, Stuart A, "Growth Factors and Cancer," Science. 1991 Nov 22; 254: 1146-1153. Keywords: science, disorder, disease, cancer 3. Abbott, A, "Gene Transfer Patent Is Revoked," Nature. 1994 Mar; 368: 5. Keywords: press, patent, policy, plant 4. Abbott, A, "Gene Therapy: Italians First to Use Stem Cells," Nature. 1992 Apr; 356: 465. Keywords: press, therapy 5. Abbott, Alison, "European Patent Office Rejects Bid to Revoke First Plant Patent," Nature. 1992 Jun 18; 357: 525. Keywords: press, patent, international, biotechnology, plants 6. Abbott, Alison, "Germany Wants to Modify Gene Laws," Nature. 1993 Jun 10; 363: 481. Keywords: international, press, legal, legislation 7. Abdellah, Faye G, "The Human Genome Initiative -- Implications for Nurse Researchers," Journal of Professional Nursing. 1991 Nov-Dec; 7(6): 332. Keywords: survey, HGP, ethics 8. Abelson, Philip H, "Biotechnology in a Global Economy," Science. 1992 Jan 24; 255(5043): 381. Keywords: patent, biotechnology 9. Abir-Am, Pnina, "The Discourse of Physical Power and Biological Knowledge in the 1930's: A Reappraisal of the Rockefeller Foundation's `Policy' in," Social Studies of Science. 1982; 12: 341-382. Keywords: eugenics, history 10. Ablon, "Social Dimensions of Genetic Disorders," Practical Anthropology. 1992; 14: 10-13. Keywords: social-impact 11. Abram, Morris B, "Splicing Life: A Report on the Social and Ethical Issues of Genetic Engineering with Human Beings.," 1982 Nov: 115 p. Keywords: ethics, biotechnology, behavior 12. Abrams, Jim, "Genetics Research Poses Major Threat of Discrimination, Experts Say," Associated Press. 1991 Oct 17. Keywords: press, discrimination, privacy, eugenics, insurance, employment, ELSI 13. Aby, Stephen H.; McNamara, Martha J., eds, "The IQ Debate: A Selective Guide to the Literature," Westport, CT: Greenwood Press; 1990: 228 p. Keywords: behavior, IQ, bibliography 1 This listing is brought to you by the Biological and Environmental Research Information System (BERIS), Oak Ridge National Laboratory, and funded by the Department of Energy Office of Science, Office of Biological and Environmental Research, Human Genome Program. Compiled by Michael S. Yesley, J.D., Los Alamos National Laboratory. Ethical, Legal, and Social Issues Bibliography Page 2 of 399 14. Academia Europaea, "Research on the Human Genome in Europe and Its Relation to Activities Elsewhere in the World," London: Academia Europaea; 1991 March 20: 23 p. Keywords: international, HGP 15. Ackerman, Sandr, "Taking on the Human Genome," American Scientist. 1988 Jan; 76(1): 17-18. Keywords: press, political, HGP 16. Acuff, K. L.; Faden, R. R, "A History of Prenatal and Newborn Screening Programs: Lessons for the Future," In: Faden, Geller et al., eds., @AIDS, Women, and the Next Generation: Towards a Morally Acceptable Policy for HIV Testing of Keywords: screening, disorder, AIDS, ethics 17. Ad Hoc Committee of Experts on Bioethics (CAHBI), "Draft Recommendation on the Use of Analysis of Deoxyribonucleic Acid (DNA) within the Framework of the Criminal," (CAHBI (91) 17 Addendum II, Revised [ADBI9117.A]). Council of Europe. 1991 Dec 17. Keywords: international, ethics, regulation, legal, forensic 18. Ad Hoc Committee of Experts on Bioethics (CAHBI), "Draft Recommendation on Genetic Testing and Screening for Health Care Purposes and Draft Explanatory Memorandum," (CAHBI (91) 17 Addendum I, Revised [ABI91AD1.A]). Council of Europe. 1991 Dec 17. Keywords: international, ethics, regulation, legal, screening, testing 19. Adams, David H, "Self-Organisation and Living Systems: Is DNA an `Artificial Intelligence'?," Medical Hypotheses. 1989; 29: 223-229. Keywords: science 20. Adams, Dwight E, "Validation of the FBI Procedure for DNA Analysis: A Summary," Federal Bureau of Investigation, Crime Laboratory Digest Special Reprint Issue: DNA Analysis: A Collection of Articles 1988-1991. Keywords: forensic 21. Adams, Dwight E.; Presley, Lawrence A.; Baumstark, Anne L.; Hensley, Kathy W.; Hill, Alice L, "Deoxyribonucleic Acid (DNA) Analysis by Restriction Fragment Length Polymorphisms of Blood and Other Body Fluid Stains Subjected to," Journal of Forensic Sciences. 1991 Jun 21: 1284-1298. Keywords: forensic, science 22. Adams, Jean, "Confidentiality and Huntington's Chorea," Journal of Medical Ethics. 1990 Dec; 16(4): 196-199. Keywords: counseling, privacy, ethics, disorder, HD 23. Adams, M. B, "The Evolution of Theodosius Dobzhansky," Princeton, NJ: Princeton University Press; 1994. Keywords: history, biography, ethics, genetics, science, health, eugenics 24. Adams, Mark B, "Eugenics in Russia, 1900-1940," In: Adams, ed., @The Wellborn Science,@ 1990, 153-216. Keywords: eugenics 25. Adams, Mark B, "Towards a Comparative History of Eugenics," In: Adams, ed., @The Wellborn Science,@ 1990, 217-231. Keywords: eugenics 26. Adams, Mark B., ed., "The Wellborn Science: Eugenics in Germany, France, Brazil, and Russia," New York: Oxford University Press; 1990: 242 p. Keywords: eugenics, history 27. Adams, Mark D.; Kelley, Jenny M.; Gocayne, Jeannine D.; Dubnick, Mark; Polymeropoulos, Mihael H.; et al, "Complementary DNA Sequencing: Expressed Sequence Tags and Human Genome Project," Science. 1991 Jun 21; 252: 1651-1656. Keywords: science, HGP Ethical, Legal, and Social Issues Bibliography Page 3 of 399 28. Adelman, Cynthia Smith, "The Constitutionality of Mandatory Genetic Screening Statutes," Case Western Reserve Law Review. 1981; 31: 897-948. Keywords: screening, legislation, legal, jurisprudence, privacy 29. Adelmund, K. Y. I. J, "The Role of Employees," In: Rigter, Bletz et al., eds., @The Social Consequences of Genetic Testing,@ 1990: 61-64. Keywords: international, screening, employment 30. Adema, Alison Priske, "DNA Fingerprinting Evidence: The Road to Admissibility in California," San Diego Law Review. 1989 Mar-Apr; 26(2): 377-415. Keywords: forensic, legal, jurisprudence, admissibility 31. Adler, J., Hager, M., Springen, K, "Clone Hype," Newsweek. 1993 Nov: 60-62. Keywords: press, science, biotechnology, reproduction, religion 32. Adler, Rei, "Introduction: Evolving and Recombinant Biotechnology Law and Biotechnology Law Issues," AIPLA Quarterly Journal. 1988-1989; 16(3&4): 287-293. Keywords: patent, biotechnology, patent 33. Adler, Reid G, "Biotechnology As an Intellectual Property," Science. 1984 Apr 27; 224: 357-363. Keywords: patent, biotechnology, legal, jurisprudence 34. Adler, Reid G, "Genome Research: Fulfilling the Public's Expectations for Knowledge and Commercialization," Science. 1992 Aug 14: 908-914. Keywords: patent, legal 35. Administrative Conference of the United States, "Recommendation 89-7, Federal Regulation of Biotechnology," 1989. Keywords: legal, regulation, biotechnology 36. Agarwal, S.; Khardori, R.; Khardori, N, "Gene Therapy: A Status Report," J Assoc Physicians India. 1992 Feb; 40(2): 95-98. Keywords: science, therapy, international 37. Agency for Health Care Policy and Research, "Persons Denied Private Health Insurance Due to Poor Health," Data Summary 4. 1991 Dec. Keywords: insurance, discrimination, press 38. Ager, Brian, "The Regulation of Genetic Manipulation," In: Wheale, McNally, eds., @The Bio- Revolution,@ 1990: 237-252. Keywords: biotechnology, regulation, international, social-impact 39. Agich, George J, "Genetic Justice," University of Western Ontario Law Review. 1986; 24: 39-50. Keywords: ethics, legal, discrimination, jurisprudence, equality 40. Agnew, Bruce, "Can the Genome Project Flourish without Watson?," Journal of NIH Research. 1992 May; 4(5): 34, 36. Keywords: press, political, HGP, allocation 41. Airozo, Diana; Warmbrodt, Robert D, "Biotechnology: Education," Beltsville, MD: National Agicultural Library; 1992 Feb: 22 p. Keywords: biotechnology, education 42. Albeda, W, "Policy Development: Some Points for Consideration," In: Rigter, Bletz et al., eds., @The Social Consequences of Genetic Testing,@ 1990: 85-88. Keywords: international, insurance 43. Albert, Tim, "Hype from Journalists and Scientists," British Medical Journal. 1992 Apr 4: 918-919. Keywords: ethics, science, HGP, therapy, international 44. Alderson, P, "In the Genes or in the Stars? Children's Competence to Consent," Journal of Medical Ethics. 1992 Sep; 18(3): 119-24. Keywords: ethics, privacy Ethical, Legal, and Social Issues Bibliography Page 4 of 399 45. Aldhous, P, "Genome Initiatives TAckle Developing World's Big Killers," Science. 1994 Jun; 264: 1848-1849. Keywords: animal, genetics, HGP, health, medicine 46. Aldhous, P, "French Gene Mappers at Crossroads," Science. 1994 Mar; 263: 1552-1554. Keywords: international, mapping, mutation, biotechnology 47. Aldhous, P, "Genethon to Sequence Promoters," Science. 1994 Jul; 265: 182. Keywords: press, sequencing, commercial, biotechnology, DNA 48. Aldhous, Peter, "Molecular