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References

  1. Annas, G. J. (1989). At law: Who's afraid of the human genome? The Hastings Center Report, 19(4), 19-21. https://doi.org/10.2307/3562296

  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). https://sciencetechnologystudies.journal.fi/article/view/55340/18172

  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). https://dx.doi.org/10.1186%2Fs12910-016-0121-5

  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. https://doi.org/10.1002/9780470015902.a0005181.pub3 

  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. https://doi.org/10.1038/gim.2014.74

  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. https://doi.org/10.1186/gm425

  8. Caulfield, T. (2016). Ethics hype?. Hastings Center Report, 46(5), 13-16. https://doi.org/10.1002/hast.612

  9. Chadwick, R., & Zwart, H. (2013). From ELSA to responsible research and promisomics. Life Sciences, Society and Policy, 9(3). https://doi.org/10.1186/2195-7819-9-3

  10. Cho, M. K. (2012). ELSI research and genetics: A co-evolution. AJOB Primary Research, 3(3), 1-2. https://doi.org/10.1080/21507716.2012.688786

  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. https://doi.org/10.1097/GIM.0b013e3181efdbd0

  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. http://library.cshl.edu/Guide-to-HGP/Guide.pdf 

  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. https://doi.org/10.1126/science.282.5389.682

  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. https://doi.org/10.1038/ng1436

  15. Cook-Deegan, R. (1994). The gene wars: Science, politics, and the human genome. W. W. Norton & Company. https://books.google.com/books/about/The_Gene_Wars.html?id=5B0k-LUDjVEC

  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. https://repository.library.georgetown.edu/bitstream/handle/10822/556962/52%20Fink%201990%20NCHGR%20Bioethics%20Implications%20Report.pdf?sequence=1 

  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. https://doi.org/10.1016/j.techsoc.2005.04.006

  19. Forsberg, E. M. (2014). Institutionalising ELSA in the moment of breakdown? Life Sciences, Society and Policy, 10(1), 1-16. https://doi.org/10.1186/2195-7819-10-1

  20. Genetic Information Nondiscrimination Act of 2008, PL 110-233 (2008). https://www.govinfo.gov/content/pkg/PLAW-110publ233/pdf/PLAW-110publ233.pdf

  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. https://www.ncbi.nlm.nih.gov/books/NBK231967/pdf/Bookshelf_NBK231967.pdf

  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. https://doi.org/10.1038/s41431-019-0513-3

  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. https://mitpress.mit.edu/9780262035682/the-handbook-of-science-and-technology-studies/

  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. https://www.loc.gov/item/usrep274200/.

  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). https://babel.hathitrust.org/cgi/pt?id=uc1.31822008224339&view=1up&seq=1 

  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. https://books.google.com/books/about/Exploding_the_Gene_Myth.html?id=pcW0UWgs_t4C

  27. Huijer, M. (2006). Between dreams and reality: The Dutch approach to genomics and society. BioSocieties, 1, 91–95. https://doi.org/10.1017/S1745855205050143

  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. https://doi.org/10.1016/j.tig.2016.07.001

  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. http://www.ncbi.nlm.nih.gov/pmc/articles/pmc1918076/

  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. https://doi.org/10.1017/S0265052500003460

  31. Kosseim, P., & Chapman, S. (2011). Science and society: Some “Made-in-Canada” options for improving integration. Accountability in Research, 18(3), 194-216. https://doi.org/10.1080/08989621.2011.575246

  32. Lehrman, S. (1996a). Genome ethics chair resigns amid worries over autonomy. Nature. 380, 96. https://doi.org/10.1038/380096a0

  33. Lehrman, S. (1996b). Genome ethics panel comes under the microscope at NIH. Nature. 381, 357. https://doi.org/10.1038/381357a0

  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. https://doi.org/10.1111/j.1755-618X.2007.tb01134.x

  35. López, J. J., & Lunau, J. (2012). ELSIfication in Canada: Legal modes of reasoning. Science as Culture, 21(1), 77-99. https://doi.org/10.1080/09505431.2011.576240

  36. Marshall, E. (1996). The Genome Program’s Conscience. Science, 274(5287), 488-490. https://doi.org/10.1126/science.274.5287.488

  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. https://doi.org/10.1016/j.tig.2013.02.001

  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. https://doi.org/10.1146/annurev-genom-090413-025327

  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. https://doi.org/10.1101/gr.081653.108

  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. https://doi.org/10.1057/palcomms.2017.6

  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. https://doi.org/10.1353/ken.1997.0025

  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. https://dx.doi.org/10.1080%2F21507716.2012.678550

  43. National Human Genome Research Institute. (2012). ELSI Planning and Evaluation History. Genome.gov. https://www.genome.gov/10001754/elsi-planning-and-evaluation-history

  44. National Human Genome Research Institute. (2020). NHGRI History and Timeline of Events. Genome.gov.  https://www.genome.gov/about-nhgri/Brief-History-Timeline

  45. National Institutes of Health Revitalization Act of 1993, PL 103-43 § 1521 (1993).  https://www.congress.gov/103/bills/s1/BILLS-103s1enr.pdf 

  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. https://doi.org/10.5324/njsts.v3i1.2155

  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. https://doi.org/10.1038/s41436-018-0065-x

  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. https://dx.doi.org/10.1038%2Fembor.2008.134

  49. Ramsay, S. (2001). Ethical implications of research on the human genome. The Lancet, 357(9255), 535. https://doi.org/10.1016/S0140-6736(05)71689-5

  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. https://doi.org/10.1080/23299460.2016.1255701

  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. https://www.genome.gov/10000478/nihdoe-elsi-program-evaluation

  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. https://files.eric.ed.gov/fulltext/EJ955018.pdf

  53. Shen, H. (2013). US brain project puts focus on ethics. Nature, 500(7462), 261-262. https://doi.org/10.1038/500261a

  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. https://doi.org/10.1111/j.1399-0004.2012.01863.x

  55. Stegmaier, P. (2009). The rock ‘n’ roll of knowledge co‐production. EMBO reports, 10(2), 114-119. https://dx.doi.org/10.1038%2Fembor.2008.253

  56. van der Weele, C. (2008). Moral agendas for genomics: How to find the blind spots? Configurations, 16(1), 117-135. https://doi.org/10.1353/con.0.0042

  57. Van Est, R. (2011). The broad challenge of public engagement in science. Science and Engineering Ethics, 17(4), 639-648. https://doi.org/10.1007/s11948-011-9296-9

  58. Walker, R. L., & Morrissey, C. (2012). Charting ELSI’s future course: Lessons from the recent past. Genetics in Medicine, 14(2), 259-267. https://doi.org/10.1038/gim.2011.60

  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. https://dx.doi.org/10.1111%2Fbioe.12023

  60. Watson, J. D. (1990). The Human Genome Project: Past, present, and future. Science, 248(4951), 44-49. https://doi.org/10.1126/science.2181665

  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. https://books.google.com/books?id=x5nuAAAAMAAJ&q=Are+genes+us?+cranor&dq=Are+genes+us?+cranor&hl=en&newbks=1&newbks_redir=1&printsec=frontcover&sa=X&ved=2ahUKEwiel9Kk7NXsAhXWo54KHVRaAk4Q6AEwAnoECAMQAg

  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. https://doi.org/10.1111/j.1748-720X.2008.00266.x

  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. https://doi.org/10.1002/0471250597.mur045

  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). https://doi.org/10.1186/1472-6939-14-21

  65. Yesley, M. S. (1998). Protecting genetic difference. Berkeley Technology Law Journal, 13(2), 653-665. http://dx.doi.org/10.15779/Z38KX1J

  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. https://doi.org/10.1007/s12280-010-9131-4

  67. Yudell, M., Roberts, D., DeSalle, R., & Tishkoff, S. (2016). Taking race out of human genetics. Science, 351(6273), 564-565. https://doi.org/10.1126/science.aac4951

  68. Yudell, M., Roberts D., DeSalle, R., & Tishkoff, S. (2020). NIH must confront the use of race in science. Science, 368(6509), 1313-1314. https://doi.org/10.1126/science.abd4842

  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. https://doi.org/10.1186/s40504-014-0011-x

  70. Zwart, H., & Nelis, A. (2009). What is ELSA genomics? EMBO reports, 10(6), 540 - 544. https://doi.org/10.1038/embor.2009.115

  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. https://doi.org/10.1001/jama.1992.03480130021002