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.
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 |
Fanos JH . New "first families": the psychosocial impact of new genetic technologies. Genet Med, 14 (2):189-90. 2012. [PubMed] | Journal Article |
Ormond, K. E. et al. Challenges in the clinical application of whole-genome sequencing. Lancet 375, 1749–51 (2010). [The Lancet] |
Journal Article |
Ormond, K. E., Smith, M. E. & Wolf, W. A. The Views of Participants in DNA Biobanks. Stanford J. Law, Sci. Policy 1, 80–87 (2010). [Stanford Law School] |
Journal Article |
Lappe M, Tabor H . The Autism Genetic Resource Exchange: Changing Pace, Priorities, and Roles in Discovery Science. In Burke W, Edwards KA, Goering S, Holland S, Trinidad SB Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit. New York, NY: Oxford University Press. 56-71. 2011. | Book Chapter |
Ormond, K. E. et al. Medical and graduate students’ attitudes toward personal genomics. Genet. Med. 13, 400–8 (2011). [PubMed] |
Journal Article |
Floyd, E., Allyse, M. A., & Michie, M. (2016). Spanish- and English-Speaking Pregnant Women's Views on cfDNA and Other Prenatal Screening: Practical and Ethical Reflections. J Genet Couns, 25(5), 965-977. doi:10.1007/s10897-015-9928-3 [PubMed] |
Journal Article |
Murdoch, C. E. & Scott, C. T. Stem cell tourism and the power of hope. Am. J. Bioeth. AJOB 10, 16–23 (2010). [PubMed] |
Journal Article |
Harvey, H., Havard, M., Magnus, D., Cho, M. K. & Riedel-Kruse, I. H. Innocent fun or ‘microslavery’? An ethical analysis of biotic games. Hastings Cent. Rep. 44, 38–46 [PubMed] |
Journal Article |
Murdoch, C. E. & Scott, C. T. Response to open peer commentaries on “Stem cell tourism and the power of hope”. Am. J. Bioeth. AJOB 10, W1–3 (2010). [PubMed] |
Journal Article |
Steinbach, R. J., et al. (2016). ""This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening." Am J Med Genet A 170a(2): 363-374. [PubMed] [Wiley Online Library] |
Journal Article |
Frueh FW, Greely HT, Green RC, Hogarth S, Siegel S . The future of direct-to-consumer clinical genetic tests. Nat Rev Genet, 12 (7):511-5. 2011. [PubMed] | Journal Article |
Allyse M, Milner LC, Cho MK . Ethics watch: the G.I. genome: ethical implications of genome sequencing in the military. Nat Rev Genet, 12 (9):589. 2011. [PubMed] | Journal Article |
Wade CH, Wilfond BS . Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests. Am J Med Genet C Semin Med Genet, 142C (4):284-92, discussion 293. 2006. [PubMed] | Journal Article |
Ashley EA, Butte AJ, Wheeler MT et al. Clinical assessment incorporating a personal genome. Lancet, 375 (9725):1525-35. 2010. [PubMed] | Journal Article |
Wheeler, M., et al. (2009). "A new era in clinical genetic testing for hypertrophic cardiomyopathy." J Cardiovasc Transl Res 2(4): 381-391. [PubMed] [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 |
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, 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 |
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 |
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 |
Magnus D. The Ethics of Preimplantation Genetic Diagnosis. Fertility Today, v.1, no.1, 2005. |
Journal Article |
McGuire, A. L., Cho, M. K., McGuire, S. E. & Caulfield, T. Medicine. The future of personal genomics. Science (80-. ). 317, 1687 (2007). [PubMed] |
Journal Article |
Cho MK, Tobin SL, Greely HT, McCormick J, Boyce A, Magnus D. Strangers at the Benchside: Research Ethics Consultation. American Journal of Bioethics, 2008. [PubMed] [PubMed] |
Journal Article |
McGuire, A. L., Caulfield, T. & Cho, M. K. Research ethics and the challenge of whole-genome sequencing. Nat. Rev. Genet. 9, 152–6 (2008). [PubMed Central] |
Journal Article |
Cho MK. Racial and ethnic categories in biomedical research: there is no baby in the bathwater. J Law Med Ethics, 34(3):497-9. 2006. [PubMed] |
Journal Article |
Illes, J. et al. Ethics. Incidental findings in brain imaging research. Science (80-. ). 311, 783–4 (2006). [PubMed Central] |
Journal Article |
Illes J. Pandora's box' of incidental findings in brain imaging research. Nature Clinical Practice Neurology 2:60-61. 2006 [PubMed] |
Journal Article |
Illes, J., De Vries, R., Cho, M. K. & Schraedley-Desmond, P. ELSI priorities for brain imaging. Am. J. Bioeth. AJOB 6, W24–31 (2006). [PubMed Central] |
Journal Article |
Caulfield T, McGuire AL, Cho MK, et al. Research ethics recommendations for whole genome research: Consensus statement. PLoS Biology, 6(3):0430-35. 2008. [PubMed] |
Journal Article |
Illes, J. et al. Practical approaches to incidental findings in brain imaging research. Neurology 70, 384–90 (2008). [PubMed Central] |
Journal Article |
Cho, M. K., et al. (2008). "Research ethics consultation: the Stanford experience." Irb 30(6): 1-6. [PubMed] [PubMed] |
Journal Article |
Greely HT. The Uneasy Ethical and Legal Underpinnings of Large-Scale Genomic Biobanks. ANN. REV. HUM GENETICS & GENOMICS, 8:343-364. 2007. [PubMed] |
Journal Article |
Tischler, R., Hudgins, L., Blumenfeld, Y. J., Greely, H. T., & Ormond, K. E. (2011). Noninvasive prenatal diagnosis: pregnant women’s interest and expected uptake. Prenatal Diagnosis, 31(13), 1292–9. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/22028097 [PubMed] |
Journal Article |
Tobin SL, Lee SS-J, Greely HT, Cho MK . Not a loophole: commercial exploitation of an IRB error. PLoS Genet, 2010. [Full Text] | Journal Article |
Sankar, P., Cho, M. K., Wolpe, P. R. & Schairer, C. What is in a cause? Exploring the relationship between genetic cause and felt stigma. Genet. Med. 8, 33–42 (2006). [Nature] |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
Kho, A. N. et al. Electronic medical records for genetic research: results of the eMERGE consortium. Sci. Transl. Med. 3, 79re1 (2011). |
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 |
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 |
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 |
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 |
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 |
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 |
Denny JC, Crawford DC, Richie MD, Bielinski SJ, Basford M, Bradford Y, Chai HS, Bastarache L, Zuvich R et al. Variants near FOXE1 are associated with hypothyroidism and other thyroid conditions: using electronic medical records for genome- and phenome-wide studies. Am J Hum Genet, 89 (4):529-42. 2011. [PubMed Central] | Journal Article |
Ding K, Kullo IJ . Genome-wide association studies for atherosclerotic vascular disease and its risk factors. Circ Cardiovasc Genet, 2 (1):63-72. 2009. [PubMed] | Journal Article |
Ding K, Shameer K, Jouni H, Masys DR, Jarvik GP, Kho AN, Ritchie MD, McCarty CA, Chute CG, Manolio TA, Kullo IJ . Genetic Loci implicated in erythroid differentiation and cell cycle regulation are associated with red blood cell traits. Mayo Clin Proc, 87 (5):461-74. 2012. [PubMed] | Journal Article |
Zuvich RL, Armstrong LL, Bielinski SJ, Bradford Y, Carlson CS, Crawford DC et al. Pitfalls of merging GWAS data: lessons learned in the eMERGE network and quality control procedures to maintain high data quality. Genet Epidemiol, 35 (8):887-98. 2011. [PubMed] | 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 |
Peissig, P. L. et al. Importance of multi-modal approaches to effectively identify cataract cases from electronic health records. J. Am. Med. Informatics Assoc. 19, 225–34 (2012). [PubMed] |
Journal Article |
Pathak, J. et al. Mapping clinical phenotype data elements to standardized metadata repositories and controlled terminologies: the eMERGE Network experience. J. Am. Med. Informatics Assoc. 18, 376–86 (2011). [PubMed Central] |
Journal Article |
Pathak, J., Peters, L., Chute, C. G. & Bodenreider, O. Comparing and evaluating terminology services application programming interfaces: RxNav, UMLSKS and LexBIG. J. Am. Med. Informatics Assoc. 17, 714–9 (2010). [PubMed Central] |
Journal Article |
Pathak, J. & Chute, C. G. Analyzing categorical information in two publicly available drug terminologies: RxNorm and NDF-RT. J. Am. Med. Informatics Assoc. 17, 432–9 (2010). [PubMed Central] |
Journal Article |
Sohn, S. & Savova, G. K. Mayo clinic smoking status classification system: extensions and improvements. AMIA Annu. Symp. Proc. 2009, 619–23 (2009). [PubMed] |
Journal Article |
McCarty, C, Chapman-Stone, D, Derfus, T, Giampietro, P, Fost, N, the Marshfield Clinic PMRP Community Advisory Group. Community consultation and communication for a population-based DNA biobank: The Marshfield Clinic Personalized Medicine Research Project. American Journal of Medical Genetics, 146A(23):3026-33. 2008. [PubMed] |
Journal Article |
Last updated: January 24, 2019