1. Annas, G. J. (1989). At law: Who's afraid of the human genome? The Hastings Center Report, 19(4), 19-21.

  2. Balmert, A. S., Calvert, J., Marris, C., Molyneux-Hodgson, S., Frow, E., Kearnes, M., Bulpin, K., Schyfter, P., Mackenzie, A., & Martin, P. (2015). Taking roles in interdisciplinary collaborations: Reflections on working in post-ELSI spaces in the UK synthetic biology community. Science and Technology Studies, 28(3).

  3. Bell, J., Ancillotti, M., Coathup, V., Coy, S., Rigter, T., Tatum, T., Grewal J., Akcesme, F. B., Brkić, J., Causevic-Ramosevac, A., Milovanovic, G., Nobile, M., Pavlidis, C., Finlay, T., & Kaye, J. (2016). Challenges and opportunities for ELSI early career researchers. BMC Medical Ethics, 17(37).

  4. Boyer, J. T., Lawrence, B. C., Kaufman, D., Lockhart, N. C., & McEwen, J. E. (2017). ELSI Research Programme of the NHGRI. In eLS. John Wiley & Sons, Ltd. 

  5. Boyer, J. T. (2020, October 12-18). Building an ELSI research career across the academic lifecycle [Panel presentation]. American Society for Bioethics and Humanities, Virtual Conference.

  6. Burke, W., Appelbaum, P., Dame, L., Marshall, P., Press, N., Pyeritz, R., Sharp, R., & Juengst, E. (2015). The translational potential of research on the ethical, legal, and social implications of genomics. Genetics in Medicine, 17(1), 12-20.

  7. Caulfield, T., Chandrasekharan, S., Joly, Y., & Cook-Deegan, R. (2013). Harm, hype and evidence: ELSI research and policy guidance. Genome Medicine, 5(3), 21.

  8. Caulfield, T. (2016). Ethics hype?. Hastings Center Report, 46(5), 13-16.

  9. Chadwick, R., & Zwart, H. (2013). From ELSA to responsible research and promisomics. Life Sciences, Society and Policy, 9(3).

  10. Cho, M. K. (2012). ELSI research and genetics: A co-evolution. AJOB Primary Research, 3(3), 1-2.

  11. Clayton, E.W., Smith, M., Fullerton, S. M., Burkey, W., McCarty, C. A., Koenig, Barbara A., McGuire, A. L., Beskow, L. M., Dressler, L., Lemke, A. A., Ramos, E. M., & Rodriguez, L. L. (2010). Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium. Genetics in Medicine, 12(10), 616–620.

  12. Cold Spring Harbor Laboratory Library & Archives. (2016). Ethical, legal, and social implications (ELSI) of genome research. In Kevin Davies (ed.), Human Genome Project documentary history: An annotated scholarly guide to the HGP, 75-83. 

  13. Collins, F. S., Patrinos, A., Jordan, E., Chakravarti, A., Gesteland, R., & Walters, L. (1998). New goals for the U.S. Human Genome Project: 1998–2003. Science, 282(5389), 682-689.

  14. Collins, F. S. (2004). What we do and don't know about 'race','ethnicity', genetics and health at the dawn of the genome era. Nature Genetics, 36(11), S13-S15.

  15. Cook-Deegan, R. (1994). The gene wars: Science, politics, and the human genome. W. W. Norton & Company.

  16. Ethical, Legal, and Social Implications (ELSI) Research Advisors (ERA). (2005). Report to the National Advisory Council for Human Genome Research.

  17. Fink, L. (1990). Human Genome Project progress: Backgrounder: NCHGR bioethics program addresses social and ethical implications of knowledge about human genes. National Center for Genome Research. 

  18. Fisher, E. (2005). Lessons learned from the Ethical, Legal and Social Implications program (ELSI): Planning societal implications research for the National Nanotechnology Program. Technology in Society, 27(3), 321-328.

  19. Forsberg, E. M. (2014). Institutionalising ELSA in the moment of breakdown? Life Sciences, Society and Policy, 10(1), 1-16.

  20. Genetic Information Nondiscrimination Act of 2008, PL 110-233 (2008).

  21. Hanna, K.E. (1995). The ethical, legal, and social implications program of the National Center for Human Genome Research: A missed opportunity? In R. E. Bulger, E. M. Bobby, & H. V. Fineberg (Eds.), Society’s Choices: Social and Ethical Decision Making in Biomedicine (pp. 432–457). National Academy Press.

  22. Hartman, A. L., Hechtelt Jonker, A., Parisi, M. A., Julkowska, D. Lockhart, N., & Isasi, R. (2020). Ethical, legal, and social issues (ELSI) in rare diseases: A landscape analysis from funders. European Journal of Human Genetics, 28(2), 174-181.

  23. Hilgartner, S., Prainsack, B., & Hurlbut, J. B. (2016). Ethics as governance in genomics and beyond. In: U. Felt, R. Fouché, C. A. Miller, & L. Smith-Doerr (Eds), Handbook of science and technology studies (4th ed., pp. 823-852). MIT Press.

  24. Holmes, O. W., & Supreme Court Of The United States. (1926). U.S. Reports: Buck v. Bell, (U.S. Reports Vol. 274). The Library of Congress.

  25. House Committee on Government Operations, 102nd Cong. Designating genetic information policy: The need for an independent policy review of the ethical, legal, and social implications of the human genome project. (Comm. print 1992). 

  26. Hubbard, R., & Wald, E. (1993). Exploding the gene myth: How genetic information is produced and manipulated by scientists, physicians, employers, insurance companies, educators, and law enforcers (1st ed.). Beacon Press.

  27. Huijer, M. (2006). Between dreams and reality: The Dutch approach to genomics and society. BioSocieties, 1, 91–95.

  28. Joly, Y., So, D., Saulnier, K., & Dyke, S. O. M. (2016). Epigenetics ELSI: Darker than you think? Trends in Genetics, 32(10), 591-592.

  29. Juengst, E. T. (1994). Human genome research and the public interest: Progress notes from an American science policy experiment. American Journal of Human Genetics, 54(1), 121-128.

  30. Juengst, E. T. (1996). Self-critical federal science? The ethics experiment within the U.S. Human Genome Project. Social Philosophy and Policy, 13(2), 63-95.

  31. Kosseim, P., & Chapman, S. (2011). Science and society: Some “Made-in-Canada” options for improving integration. Accountability in Research, 18(3), 194-216.

  32. Lehrman, S. (1996a). Genome ethics chair resigns amid worries over autonomy. Nature. 380, 96.

  33. Lehrman, S. (1996b). Genome ethics panel comes under the microscope at NIH. Nature. 381, 357.

  34. López, J. J., & Robertson, A. (2007). Ethics or politics?: The Emergence of ELSI discourse in Canada. Canadian Review of Sociology, 44(2), 201-218.

  35. López, J. J., & Lunau, J. (2012). ELSIfication in Canada: Legal modes of reasoning. Science as Culture, 21(1), 77-99.

  36. Marshall, E. (1996). The Genome Program’s Conscience. Science, 274(5287), 488-490.

  37. McEwen, J. E., Boyer, J. T., & Sun, K. Y. (2013). Evolving approaches to the ethical management of genomic data. Trends in Genetics, 29(6), 375-382.

  38. McEwen, J. E., Boyer, J. T., Sun, K. Y., Rothenberg, K. H., Lockhart, N. C., & Guyer, M. S. (2014). The Ethical, Legal, and Social Implications Program of the National Human Genome Research Institute: Reflections on an ongoing experiment. Annual Review of Genomics and Human Genetics, 15, 481-505.

  39. McGuire, A. L., Colgrove J., Whitney, S. N., Diaz. CM, Bustillos, D., & Versalovic, J. (2008). Ethical, legal, and social considerations in conducting the Human Microbiome Project. Genome Research, 18(12), 861–1864.

  40. Mehlich, J. (2017). “Is, ought, should”—scientists’ role in discourse on the ethical and social implications of science and technology. Palgrave Communications, 3(1), 1-6.

  41. Meslin, E. M., Thomson, E. J., & Boyer, J. T. (1997). The ethical, legal, and social implications research program at the national human genome research institute. Kennedy Institute of Ethics Journal, 7(3), 291–298.

  42. Morrissey, C., & Walker, R. L. (2012). Funding and forums for ELSI research: Who (or what) is setting the agenda? AJOB Primary Research, 3(3), 51-60.

  43. National Human Genome Research Institute. (2012). ELSI Planning and Evaluation History.

  44. National Human Genome Research Institute. (2020). NHGRI History and Timeline of Events.

  45. National Institutes of Health Revitalization Act of 1993, PL 103-43 § 1521 (1993). 

  46. Nydal, R., Myhr, A. I., & Myskja, B. K. (2015). From ethics of restriction to ethics of construction: ELSA research in Norway. Nordic Journal of Science and Technology Studies, 3(1), 34-45.

  47. Parker, L.S., Sankar, P.L., Boyer, J., McEwen J.D. J., & Kaufman, D. (2019). Normative and conceptual ELSI research: What it is, and why it’s important. Genetics in Medicine, 21, 505–509.

  48. Penders, B., Horstman, K., & Vos, R. (2008). A ferry between cultures: Crafting a new profession at the intersection of science and society. EMBO reports, 9(8), 709-713.

  49. Ramsay, S. (2001). Ethical implications of research on the human genome. The Lancet, 357(9255), 535.

  50. Rip, A. (2016). The clothes of the emperor. An essay on RRI in and around Brussels. Journal of Responsible Innovation, 3(3), 290-304.

  51. Rothstein, Mark A., Spence, M. Anne, Buffler, Patricia A., Childress, James F., Epstein, Charles J., Hilgartner, Stephen, Knoppers, Bartha Maria, Mackta, Jayne, Olson, Marynard V., Shine, Kenneth I., Walker, Bailus. (1996). Report of the Joint NIH/DOE Committee to evaluate the Ethical, Legal and Social Implications Program of the Human Genome Project. The National Human Genome Research Institute.

  52. Seltzer, D., Zoloth, L., Traina, C. L., & Kiesling, L. (2011). Paved with good intentions: Rethinking the ethics of ELSI research. Journal of Research Administration, 42(2), 15-24.

  53. Shen, H. (2013). US brain project puts focus on ethics. Nature, 500(7462), 261-262.

  54. Skirton, H., Goldsmith, L., Jackson, L., & O’Connor, A. (2012). Direct to consumer genetic testing: a systematic review of position statements, policies and recommendations. Clinical Genetics, 82(3), 210-218.

  55. Stegmaier, P. (2009). The rock ‘n’ roll of knowledge co‐production. EMBO reports, 10(2), 114-119.

  56. van der Weele, C. (2008). Moral agendas for genomics: How to find the blind spots? Configurations, 16(1), 117-135.

  57. Van Est, R. (2011). The broad challenge of public engagement in science. Science and Engineering Ethics, 17(4), 639-648.

  58. Walker, R. L., & Morrissey, C. (2012). Charting ELSI’s future course: Lessons from the recent past. Genetics in Medicine, 14(2), 259-267.

  59. Walker, R. L., & Morrissey, C. (2014). Bioethics methods in the ethical, legal, and social implications of the Human Genome Project literature. Bioethics, 28(9), 481-490.

  60. Watson, J. D. (1990). The Human Genome Project: Past, present, and future. Science, 248(4951), 44-49.

  61. Weiner, C. (1994). Anticipating the consequences of genetic Engineering: Past, present, and future. In C. F. Cranor, Are genes us? The social consequences of the new genetics (pp. 31–55). Rutgers University Press.

  62. Wolf, S. M., Lawrenz, F. P., Nelson, C. A., Kahn, J. P., Cho M. K., Clayton E. W., Fletcher, J. G., Georgieff, M. K., Hammerschmidt, D., Hudson, K., Illes, J., Kapur, V., Keane, M. A., Koenig, B. A., LeRoy, B. S., McFarland, E. G., Paradise, J., Parker, L. S.,  Terry, S. F., Van Ness, B., &  Wilfond, B. S. (2008). Managing incidental findings in human subjects research: Analysis and recommendations. The Journal of Law, Medicine & Ethics, 36(2), 219-248.

  63. Wolfe, A. (2002). Federal policy making for biotechnology, executive branch, ELSI. In T.H. Murray and M.J. Mehlman (Eds.), Encyclopedia of ethical, legal and policy issues in biotechnology (Vol. 1, pp. 234-240). John Wiley & Sons, Inc.

  64. Wright, G. E.B., Koornhof, P. G.J., Adeyemo, A. A., & Tiffin, N. (2013). Ethical and legal implications of whole genome and whole exome sequencing in African populations. BMC Medical Ethics, 14(21).

  65. Yesley, M. S. (1998). Protecting genetic difference. Berkeley Technology Law Journal, 13(2), 653-665.

  66. Yoon, J. R., Cho, S. K., & Jung, K. W. (2010). The challenges of governing biotechnology in Korea. East Asian Science, Technology and Society: An International Journal, 4(2), 335-348.

  67. Yudell, M., Roberts, D., DeSalle, R., & Tishkoff, S. (2016). Taking race out of human genetics. Science, 351(6273), 564-565.

  68. Yudell, M., Roberts D., DeSalle, R., & Tishkoff, S. (2020). NIH must confront the use of race in science. Science, 368(6509), 1313-1314.

  69. Zwart, H., Landeweerd, L., & van Rooij, A. (2014). Adapt or perish? Assessing the recent shift in the European research funding arena from ‘ELSA’ to ‘RRI’. Life Sciences, Society and Policy, 10(1), 1-19.

  70. Zwart, H., & Nelis, A. (2009). What is ELSA genomics? EMBO reports, 10(6), 540 - 544.

  71. Zylke, J. W. (1992). Examining life's (genomic) code means reexamining society's long-held code. Journal of the American Medical Association, 267(13), 1715-1716.