ELSI Publications and Products Database
Since its creation in 1990, the Ethical, Legal and Social Implications (ELSI) Research Program has funded hundreds of research projects, conferences, and other activities-through grants and contracts. This has resulted in many peer reviewed journal articles, books, newsletters, websites, television and radio programs and educational materials. Many of these products are included in this database (updates are still in progress). However, there are likely to be a number of publications missing, particularly those affiliated with older grants.
Mouchawar, J. et al. Impact of direct-to-consumer advertising for hereditary breast cancer testing on genetic services at a managed care organization: A naturally-occurring experiment. Genet. Med. 7, 191–197 (2005). [Nature] |
Journal Article |
Sankar, P., Cho, M. K. & Mountain, J. Race and ethnicity in genetic research. Am. J. Med. Genet. Part A 143A, 961–70 (2007). [PubMed Central] |
Journal Article |
Singh, J., Illes, J., Lazzeroni, L. & Hallmayer, J. Trends in US autism research funding. J. Autism Dev. Disord. 39, 788–95 (2009). [PubMed] |
Journal Article |
Singh, J., Hallmayer, J. & Illes, J. Interacting and paradoxical forces in neuroscience and society. Nat. Rev. Neurosci. 8, 153–60 (2007). [PubMed Central] |
Journal Article |
Greely, H. T. in Impact Behav. Sci. Crim. Law (Farahany, N. A.) 161–182 (Oxford University Press, 2009). |
Book Chapter |
Sankar P, Wolpe PR, Jones NL, Cho MK. How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genet, 9(2):78-86. 2006. [PubMed] |
Journal Article |
Butte AJ. Kohane IS. Creation and implications of a phenome-genome network. Nature Biotechnology, 24(1):55-62. 2006. [PubMed] |
Journal Article |
Illes J, Blakemore C, Hansson M, Hensch T, Leshner A, Maestre G, Magistretti P, Quirion R, Strata P. International perspectives on engaging the public in neuroethics. Nature Reviews Neuroscience, 6(12):977-982. 2006 [PubMed Central] |
Journal Article |
McCormick, J. B., Owen-Smith, J. & Scott, C. T. Distribution of human embryonic stem cell lines: who, when, and where. Cell Stem Cell 4, 107–10 (2009). [PubMed] |
Journal Article |
McCormick, J. B., Boyce, A. M. & Cho, M. K. Biomedical scientists’ perceptions of ethical and social implications: is there a role for research ethics consultation? PLoS One 4, e4659 (2009). [PubMed Central] |
Journal Article |
Magnus, D., Cho, M. K. & Cook-Deegan, R. Direct-to-consumer genetic tests: beyond medical regulation? Genome Med. 1, 3 (2009). [PubMed Central] |
Journal Article |
Magnus, D. & Cho, M. K. A commentary on oocyte donation for stem cell research in South Korea. Am. J. Bioeth. AJOB 6, W23–4 (2006). [PubMed] |
Journal Article |
Lee, S. S.-J. et al. Genetics. The illusive gold standard in genetic ancestry testing. Science (80-. ). 325, 38–9 (2009). [PubMed] |
Journal Article |
Lee, S. S. Social networking in the age of personal genomics. Saint Louis Univ. J. Heal. Law Policy 3, 41–60 (2009). |
Journal Article |
Lee SS-J, Mountain J, Koenig, BA. The Meanings of Race in the New Genomics. GE Henderson, SE Estroff, LR Churchill, NMP King, J Oberlander, and RP Strauss (Eds), The Social Contributions to Health, Difference and Inequality: The Social Medicine Reader. 2nd Edition, Volume II. Duke University Press. 2005. |
Book Chapter |
Lee, S. S.-J. & Crawley, L. Response to open peer commentaries on “Research 2.0: social networking and direct-to-consumer personal genomics”. Am. J. Bioeth. AJOB 9, W1–3 (2009). [PubMed] |
Journal Article |
Greely HT. Neuroethics and ELSI: Similarities and Differences. 7 MINN. J. L. SCI. & TECH, 599-637. 2006 [Full Text] |
Journal Article |
Lee, S. S.-J. & Crawley, L. Research 2.0: social networking and direct-to-consumer (DTC) genomics. Am. J. Bioeth. AJOB 9, 35–44 (2009). [PubMed] |
Journal Article |
Greely HT. Stanford Symposium on Preimplantation Genetic Diagnosis: An Introduction - and Some Conclusions. 85 FERTILITY & STERILITY 1631-32. 2006. [Full Text] |
Journal Article |
Lee, S. S.-J. Racializing drug design: implications of pharmacogenomics for health disparities. Am. J. Public Health 95, 2133–8 (2005). [PubMed Central] |
Journal Article |
Cho MK, Relman DA . Genetic technologies. Synthetic "life," ethics, national security, and public discourse. Science, 329 (5987):38-9. 2010. [PubMed] | Journal Article |
Allyse, M. & Michie, M. Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing. Trends Biotechnol. 31, 439–41 (2013). [PubMed Central] |
Journal Article |
Cho M, Wolpert M . Not yet in sequence: Clinical, technical, ethical questions linger over personal genomics. Mod Healthc, 40 (47):24. 2010. [PubMed] | Journal Article |
McCormick, J. B., Boyce, A. M., Ladd, J. M. & Cho, M. Barriers to Considering Ethical and Societal Implications of Research: Perceptions of Life Scientists. AJOB Prim. Res. 3, 40–50 (2012). [PubMed] |
Journal Article |
Valenzuela RK, Henderson MS, Walsh MH, Garrison NA, Kelch JT, Cohen-Barak O, Erickson DT, John Meaney F, Bruce Walsh J, Cheng KC, Ito S, Wakamatsu K, Frudakis T, Thomas M, Brilliant MH . Predicting phenotype from genotype: normal pigmentation. J Forensic Sci, 55 (2):315-22. 2010. [PubMed] | Journal Article |
Magnus, D. Translating stem cell research: challenges at the research frontier. J. Law, Med. Ethics 38, 267–76 (2010). [PubMed] |
Journal Article |
Brown T, Lowenberg K . Biobanks , Privacy , and the Subpoena Power. Stanf J Law Sci Policy, 1 88-101. 2009. [Full Text] | Journal Article |
Lee, S. S.-J. & Mudaliar, A. Medicine. Racing forward: the Genomics and Personalized Medicine Act. Science (80-. ). 323, 342 (2009). [PubMed Central] |
Journal Article |
Sayres, L. C. & Cho, M. K. Cell-free fetal nucleic acid testing: a review of the technology and its applications. Obstet. Gynecol. Surv. 66, 431–42 (2011). [PubMed] |
Journal Article |
Latchaw, M., Ormond, K., Smith, M., Richardson, J. & Wicklund, C. Health insurance coverage of genetic services in Illinois. Genet. Med. 12, 525–31 (2010). [PubMed] |
Journal Article |
Sayres, L. C., Allyse, M., Norton, M. E. & Cho, M. K. Cell-free fetal DNA testing: a pilot study of obstetric healthcare provider attitudes toward clinical implementation. Prenat. Diagn. 31, 1070–6 (2011). [PubMed] |
Journal Article |
Ladd, J. M., Lappé, M. D., McCormick, J. B., Boyce, A. M. & Cho, M. K. The “how” and “whys” of research: life scientists’ views of accountability. J. Med. Ethics 35, 762–7 (2009). [PubMed] |
Journal Article |
Caulfield T, Fullerton SM, Ali-Khan SE, Arbour L, Burchard EG, Cooper R, Hardy BJ, Harry S, Hyde-Lay R, Kahn J, Kittles R, Koenig B, Lee SSJ, Malinowski M, Ravitsky V, Sankar P, Scherer SW, Séguin B, Shickle D, Suarez-Kurtz G, Daar AS . Race and ancestry in biomedical research: exploring the challenges. Genome Med, 1 (1):8. 2009. [PubMed Central] | Journal Article |
Mitchell, P. B. et al. Predictive and diagnostic genetic testing in psychiatry. Clin. Lab. Med. 30, 829–46 (2010). [PubMed] |
Journal Article |
Caulfield T, Scott C, Hyun I, Lovell-Badge R, Kato K, Zarzeczny A . Stem cell research policy and iPS cells. Nat Methods, 7 (1):28-33. 2010. [PubMed] | Journal Article |
Meslin, E. M. & Cho, M. K. Research ethics in the era of personalized medicine: updating science’s contract with society. Public Health Genomics 13, 378–84 (2010). [PubMed Central] |
Journal Article |
Fanos JH, Gronka S, Wuu J, Stanislaw C, Andersen PM, Benatar M . Impact of presymptomatic genetic testing for familial amyotrophic lateral sclerosis. Genet Med, 13 (4):342-8. 2011. [PubMed] | Journal Article |
Gurwitz D, Bregman-Eschet Y . Personal genomics services: whose genomes?. Eur J Hum Genet, 17 (7):883-9. 2009. [PubMed] | Journal Article |
Feldman M . The biology of ancestry: DNA, genomic variation, and race. In H. Markus, P. Moya Doing Race: 21 Essays for the 21st Century. New York, NY: W. W. Norton & Company. 136-59. 2010. | Book Chapter |
Greely HT . Law and the revolution in neuroscience: an early look at the field. Akron Law Review, 42 687-716. 2009. | Journal Article |
Vernarelli JA, Roberts JS, Hiraki S, Chen CA, Cupples LA, Green RC . Effect of Alzheimer disease genetic risk disclosure on dietary supplement use. Am J Clin Nutr, 91 (5):1402-7. 2010. [PubMed] | Journal Article |
Muelen R. ter, Savulescu J, Kahane G Eds. Enhancing Human Capacities. Hoboken, NJ: Wiley-Blackwell 2011. | Book |
Twomey J . Ethical, legal, psychosocial, and cultural implications of genomics for oncology nurses. Semin Oncol Nurs, 27 (1):54-63. 2011. [PubMed] | Journal Article |
Greely HT . Collecting biomeasures in the Panel Study of Income Dynamics: ethical and legal concerns. Biodemography and Social Biology, 55 (2):270-88. 2009. [PubMed] | Journal Article |
Vitti JJ, Cho MK, Tishkoff SA, Sabeti PC . Human evolutionary genomics: ethical and interpretive issues. Trends Genet, 28 (3):137-45. 2012. [PubMed] | Journal Article |
Greely HT . Get ready for the flood of fetal gene screening. Nature, 469 (7330):289-91. 2011. [PubMed] | Journal Article |
Dewey FE, Chen R, Corder SP, Ormond KE, Caleshu C, Karczewski KJ et al. Phased whole-genome genetic risk in a family quartet using a major allele reference sequence. PLoS Genet, 7 (9):e1002280. 2011. [PubMed Central] | Journal Article |
Havard, M., Cho, M. K. & Magnus, D. Triggers for research ethics consultation. Sci. Transl. Med. 4, 118cm1 (2012). [PubMed] |
Journal Article |
Dudley J, Butte AJ . Enabling integrative genomic analysis of high-impact human diseases through text mining. Pac Symp Biocomput, 580-91. 2008. [PubMed] | Journal Article |
Rissman, J., Greely, H. T. & Wagner, A. D. Detecting individual memories through the neural decoding of memory states and past experience. Proc. Natl. Acad. Sci. U. S. A. 107, 9849–54 (2010). [PubMed Central] |
Journal Article |
Richardson, H. S. & Cho, M. K. Secondary researchers’ duties to return incidental findings and individual research results: a partial-entrustment account. Genet. Med. 14, 467–72 (2012). [PubMed] |
Journal Article |
Cho, M.K., P. Sankar, P.R. Wolpe and L. Godmilow. "Commercialization of BRCA1/2 Testing: Practitioner Awareness and use of a new genetic test." Am J Med Genet. 1999; 83: 157-163. [PubMed] |
Journal Article |
Sankar, P., Wolpe, P. R., Jones, N. L. & Cho, M. How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genet. 9, 78–86 (2006). [PubMed Central] |
Journal Article |
Cho, M.K., Illangasekare S., Weaver M.A., Leonard D.G.B., Merz J.F. "Effects of Patents and Licenses on the Provision of Clinical Genetic Testing Services." Journal of Molecular Diagnostics. 2003; 1 (5): 3-8. [PubMed] |
Journal Article |
Merz J.F., Leonard D.G.B., Kriss A.G., Cho M.K. "Industry opposes genomic legislation." Nature Biotechnology. 2002; 20(7): 657-657 (letter to the editor). [PubMed] |
Journal Article |
Caulfield, T., Gold, E.R. and Cho, M.K. "Patenting human genetic material: Refocusing the debate." Nature Reviews Genetics. 2000; 1: 227-231. [PubMed] |
Journal Article |
Henry, M. R., Cho, M. K., Weaver, M. A. & Merz, J. F. Genetics. DNA patenting and licensing. Science (80-. ). 297, 1279 (2002). [PubMed Central] |
Journal Article |
Henry, M. R., Cho, M. K., Weaver, M. A. & Merz, J. F. A pilot survey on the licensing of DNA inventions. J. Law, Med. Ethics 31, 442–9 (2003). [PubMed Central] |
Journal Article |
Merz, J. F., Kriss, A. G., Leonard, D. G. B. & Cho, M. K. Diagnostic testing fails the test. Nature 415, 577–9 (2002). [PubMed Central] |
Journal Article |
Merz, J. F., Magnus, D., Cho, M. K. & Caplan, A. L. Protecting subjects’ interests in genetics research. Am. J. Hum. Genet. 70, 965–71 (2002). [PubMed Central] |
Journal Article |
Merz, J. F. & Cho, M. K. What are gene patents and why are people worried about them? Community Genet. 8, 203–8 (2005). [PubMed Central] |
Journal Article |
Human Microbiome Project Consortium. Structure, function and diversity of the healthy human microbiome. Nature 486, 207–14 (2012). [PubMed Central] |
Journal Article |
Human Microbiome Project Consortium & The Human Microbiome Project Consortium. A framework for human microbiome research. Nature 486, 215–21 (2012). [PubMed] |
Journal Article |
Christensen, K. D., et al. (2018). "Anticipated responses of early adopter genetic specialists and nongenetic specialists to unsolicited genomic secondary findings." Genet Med 20(10): 1186-1195. [PubMed] [PubMed] |
Journal Article |
Appelbaum, P. S. et al. Models of Consent to Return of Incidental Findings in Genomic Research. Hastings Cent. Rep. 44, 22–32 (2014). [PubMed] |
Journal Article |
Klitzman, R. et al. Researchers’ views on return of incidental genomic research results: qualitative and quantitative findings. Genet. Med. 15, 888–95 (2013). [PubMed Central] |
Journal Article |
O'Daniel, J. M., et al. (2017). "A survey of current practices for genomic sequencing test interpretation and reporting processes in US laboratories." Genet Med 19(5): 575-582. [PubMed] [PubMed] |
Journal Article |
Wolf SM, Amendola LM, Berg JS, Chung WK, Clayton EW, Green RC, Harris-Wai J, Henderson GE, Jarvik GP, Koenig BA, Lehmann LS, McGuire AL, O'Rourke P, Somkin C, Wilfond BS, Burke W . Navigating the research-clinical interface in genomic medicine: analysis from the CSER Consortium. Genet Med, 20 (5):545-553. 2018. [PubMed] | Journal Article |
Hardart GE, Chung WK . Genetic testing of children for disease that have onset in adulthood: the limits of family interests. Pediatrics, 134 (Suppl 2):S104-110. 2014. [PubMed] | Journal Article |
Hardart, G. E. & Chung, W. K. Genetic testing of children for diseases that have onset in adulthood: the limits of family interests. Pediatrics 134 Suppl , S104–10 (2014). [PubMed] |
Journal Article |
Davis, A.M. "Exception from Informed Consent for Emergency Research: Drawing on Existing Skills and Experience." IRB: a Review of Human Subjects. 1998; 20(5): 1-8. [PubMed] |
Journal Article |
Churchill, L.R., M.L. Collins, N.M.P. King, S.G. Pemberton and K.A. Wailoo. "Genetic Research as Therapy: Implications of 'Gene Therapy' for Informed Consent." Journal of Law, Medicine & Ethics. 1998; 26: 38-47. [PubMed] |
Journal Article |
King, N. M. Rewriting the “points to consider”: the ethical impact of guidance document language. Hum. Gene Ther. 10, 133–9 (1999). [PubMed] |
Journal Article |
Lemke, AA, Trinidad, SB, Edwards, K, Starks, H, Wiesner, G, Genetics Research Review and Issues Project consortium. Attitudes toward Genetic Research Review: Results from a National Survey of Professionals involved in Human Subjects Protection. Journal of Empirical Research on Human Research Ethics, (5)1:83-91. 2010. [PubMed] |
Journal Article |
Trinidad, SB, Fullerton, SM, Ludman, EJ, Jarvik, GP, Larson, EB, Burke, W. A too limited view on participants' interests. Science, 332:306. 2011. |
Journal Article |
Edwards, KL, Lemke, AA, Trinidad, SB, Lewis, SM, Starks, H, Quinn Griffin, MT, Wiesner, GL, Genetics Research Review and Issues Project Consortium. Attitudes toward Genetic Research Review: Results from a Survey of Human Genetics Researchers. Public Health Genomics, Epub ahead of print. 2011. [PubMed] |
Journal Article |
McGuire, A. L. et al. Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience. Genome Res. 21, 1001–7 (2011). [PubMed Central] |
Journal Article |
Brown SA, Jouni H, Marroush TS, Kullo IJ. . Disclosing Genetic Risk for Coronary Heart Disease: Attitudes Toward Personal Information in Health Records.. Am J Prev Med, 52 (4):499-506. 2017. [PubMed] | Journal Article |
Jouni H, Haddad RA, Marroush TS, Brown SA, Kruisselbrink TM, Austin EE, Shameer K, Behnken EM, Chaudhry R, Montori VM, Kullo IJ. . Shared decision-making following disclosure of coronary heart disease genetic risk: results from a randomized clinical trial.. J Investig Med, 65 (3):681-688. 2017. [PubMed] | Journal Article |
McCarty, C. A. et al. The eMERGE Network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies. BMC Med. Genomics 4, 13 (2011). [PubMed Central] |
Journal Article |
Lemke, A. A., Trinidad, S. B., Edwards, K. L., Starks, H. & Wiesner, G. L. Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection. J. Empir. Res. Hum. Res. Ethics 5, 83–91 (2010). [PubMed Central] |
Journal Article |
Ludman, E. J. et al. Glad you asked: participants’ opinions of re-consent for dbGap data submission. J. Empir. Res. Hum. Res. Ethics 5, 9–16 (2010). [PubMed Central] |
Journal Article |
Brothers, KB, Clayton, EW. "Human Non-Subjects Research": Privacy and Compliance. Open Peer Commentary. American Journal of Bioethics, 10(9):15-17. 2010. [PubMed] |
Journal Article |
Lemke, A. A., Smith, M. E., Wolf, W. A. & Trinidad, S. B. Broad data sharing in genetic research: views of institutional review board professionals. IRB Ethics Hum. Res. 33, 1–5 (2011). [PubMed Central] |
Journal Article |
Brothers, K. Biobanking in pediatrics: the human nonsubjects approach. Personalized Medicine, 8(1):7179. 2011. [PubMed] |
Journal Article |
Lemke, A. A., Wolf, W. A., Hebert-Beirne, J. & Smith, M. E. Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 13, 368–77 (2010). [PubMed Central] |
Journal Article |
Lemke, A, Smith, M, Wolf, W, Trinidad, S, Genetics Research Review and Issues Project consortium. Broad Data Sharing in Genetic Research: Views of Institutional Review Board Professionals. IRB: Ethics and Human Research, 33(3):1-5. 2011. [PubMed] |
Journal Article |
Leeper, N. J., Kullo, I. J. & Cooke, J. P. Genetics of peripheral artery disease. Circulation 125, 3220–8 (2012). [PubMed] |
Journal Article |
Crosslin DR, McDavid A, Weston N, Nelson SC, Zheng X, Hart E, de Andrade M, Kullo IJ, McCarty CA, Doheny KF, Pugh E, Kho A, Hayes MG, Pretel S, Saip A, Ritchie MD, Crawford DC, Crane PK, Newton K, Li R, Mirel DB, Crenshaw A, Larson EB, Carlson CS, Jarvik G et al. Genetic variants associated with the white blood cell count in 13,923 subjects in the eMERGE Network. Hum Genet, 131 (4):639-52. 2012. [PubMed] | Journal Article |
Wei WQ, Leibson CL, Ransom JE, Kho AN, Caraballo PJ, Chai HS, Yawn BP, Pacheco JA, Chute CG . Impact of data fragmentation across healthcare centers on the accuracy of a high-throughput clinical phenotyping algorithm for specifying subjects with type 2 diabetes mellitus. J Am Med Inform Assoc, 19 (2):219-24. 2012. [PubMed] | Journal Article |
Wilke RA, Xu H, Denny JC, Roden DM, Krauss RM, McCarty CA, Davis RL, Skaar T, Lamba J, Savova G . The emerging role of electronic medical records in pharmacogenomics. Clin Pharmacol Ther, 89 (3):379-86. 2011. [PubMed Central] | Journal Article |
Trinidad, S. B., Fullerton, S. M., Bares, J. M., Jarvik, G. P., Larson, E. B., & Burke, W. (2010). Genomic research and wide data sharing: views of prospective participants. Genetics in Medicine, 12(8), 486–95. doi:10.1097/GIM.0b013e3181e38f9e [NIH Public Access] |
Journal Article |
Chute CG, Beck SA, Fisk TB, Mohr DN . The Enterprise Data Trust at Mayo Clinic: a semantically integrated warehouse of biomedical data. J Am Med Inform Assoc, 17 (2):131-5. 2010. [PubMed Central] | Journal Article |
Chute CG, Pathak J, Savova GK, Bailey KR, Schor MI, Hart LA, Beebe CE, Huff SM . The SHARPn project on secondary use of Electronic Medical Record data: progress, plans, and possibilities. AMIA Annu Symp Proc, 2011 248-56. 2011. [PubMed Central] | Journal Article |
Kullo, I. J. & Cooper, L. T. Early identification of cardiovascular risk using genomics and proteomics. Nat. Rev. Cardiol. 7, 309–17 (2010). [PubMed Central] |
Journal Article |
Clayton EW, Smith M, Fullerton SM, Burke W, McCarty CA, Koenig BA, McGuire AL, Beskow LM, Dressler L, Lemke AA, Ramos EM, Rodriguez LL et al. Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium. Genet Med, 12 (10):616-20. 2010. [PubMed] | Journal Article |
Kho, A. N. et al. Electronic medical records for genetic research: results of the eMERGE consortium. Sci. Transl. Med. 3, 79re1 (2011). |
Journal Article |
Conway, M., et al. (2011). "Analyzing the heterogeneity and complexity of Electronic Health Record oriented phenotyping algorithms." AMIA Annu Symp Proc 2011: 274-283. [PubMed] [PubMed] |
Journal Article |
Kho, A. N. et al. Use of diverse electronic medical record systems to identify genetic risk for type 2 diabetes within a genome-wide association study. J. Am. Med. Informatics Assoc. 19, 212–8 (2012). [PubMed] |
Journal Article |
Turner S, Armstrong LL, Bradford Y, Carlson CS, Crawford DC et al. Quality control procedures for genome-wide association studies.. Curr Protoc Hum Genet, Chapter 1 Unit1.19. 2011. [PubMed] | Journal Article |
Last updated: January 24, 2019