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.
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 |
Austin MA, Hair MS, Fullerton SM . Research guidelines in the era of large-scale collaborations: an analysis of Genome-wide Association Study Consortia.. Am J Epidemiol, 175 (9):962-9. 2012. [PubMed] | Journal Article |
Scott, C. T., DeRouen, M. C. & Crawley, L. M. The Language of Hope: Therapeutic Intent in Stem-Cell Clinical Trials. AJOB Prim. Res. 1, 4–11 (2010). [Taylor & Francis Online] |
Journal Article |
Cho M . Patently unpatentable: implications of the Myriad court decision on genetic diagnostics. Trends Biotechnol, 28 (11):548-51. 2010. [PubMed] | Journal Article |
Greely H, King J . The coming revolution in prenatal genetic testing. Professional ethics report : newsletter of the American Association for the Advancement of ScienceProf Ethics Rep, 23 (2):1-8. 2010. | Journal Article |
Wilcken B . Ethical issues in genetics. J Paediatr Child Health, 47 (9):668-71. 2011. [PubMed] | Journal Article |
Greely HT, Cho MK, Hogle LF, Satz DM . Thinking about the human neuron mouse. Am J Bioeth, 7 (5):27-40. 2007. [PubMed] | Journal Article |
Simon, B. M. & Scott, C. T. Unsettled expectations: how recent patent decisions affect biotech. Nat. Biotechnol. 29, 229–30 (2011). [PubMed] |
Journal Article |
Greely HT . From Nuremberg to the Human Genome: The Rights of Human Research Participants. In Rubenfeld S Medicine After the Holocaust: From the Master Race to the Human Genome and Beyond. New York, NY: Palgrave Macmillan. 185-200. 2010. | Book Chapter |
Brown T, Murphy E . Through a scanner darkly: functional neuroimaging as evidence of a criminal defendant's past mental states. Stanford Law Rev, 62 (4):1119-1208. 2010. [PubMed] | Journal Article |
Allyse, M. A. et al. Best ethical practices for clinicians and laboratories in the provision of noninvasive prenatal testing. Prenat. Diagn. 33, 656–61 (2013). [PubMed] |
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 |
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 |
Shirts, B. H. & Parker, L. S. Changing interpretations, stable genes: responsibilities of patients, professionals, and policy makers in the clinical interpretation of complex genetic information. Genet. Med. 10, 778–83 (2008). [PubMed] |
Journal Article |
Tabor, H. K. & Cho, M. K. Ethical implications of array comparative genomic hybridization in complex phenotypes: points to consider in research. Genet. Med. 9, 626–631 (2007). [PubMed] |
Journal Article |
Ormond, K. E., Cirino, A. L., Helenowski, I. B., Chisholm, R. L. & Wolf, W. A. Assessing the understanding of biobank participants. Am. J. Med. Genet. Part A 149A, 188–98 (2009). [PubMed] |
Journal Article |
Ormond, K. E. et al. Information preferences of high literacy pregnant women regarding informed consent models for genetic carrier screening. Patient Educ. Couns. 75, 244–50 (2009). [PubMed] |
Journal Article |
Ohata, T., Tsuchiya, A., Watanabe, M., Sumida, T. & Takada, F. Physicians’ opinion for “new” genetic testing in Japan. J. Hum. Genet. 54, 203–8 (2009). [PubMed] |
Journal Article |
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 |
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 |
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 |
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 |
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 |
Last updated: January 24, 2019