Recent Relevant Publications and Work
Research Educational Tools UGP Movies
Research Educational Tools Carrier Screening Video
Undergraduate Research Symposium by UCEER RA Jaden Brooks
Dugger, C., Anderson, H. S., Miller, C. E., Wong, B., Johnson, E. P., & Rothwell, E. (2020). Assessing clinical education tools for expanded carrier screening. Journal of Genetic Counseling.
Clark, L., Canary, H. E., McDougle, K., Perkins, R., Tadesse, R., & Holton, A. E. (2020). Family Sense-Making After a Down Syndrome Diagnosis. Qualitative Health Research, 30(12), 1783-1797.
Kious, B. M., Docherty, A. R., Botkin, J. R., Brown, T. R., Francis, L. P., Gray, D. D., ... & Coon, H. (2020). Ethical and public health implications of genetic testing for suicide risk: family and survivor perspectives. Genetics in medicine, 1-9.
Jalali, A., Rothwell, E., Botkin, J. R., Anderson, R. A., Butterfield, R. J., & Nelson, R. E. (2020). Cost-effectiveness of Nusinersen and universal newborn screening for spinal muscular atrophy. The Journal of Pediatrics.
Clark, L., Canary, H. E., McDougle, K., Perkins, R., Tadesse, R., & Holton, A. E. (2020). Family Sense-Making After a Down Syndrome Diagnosis. Qualitative Health Research, 30(12), 1783-1797.
Devir, N. P. (2020). Israel’s Immigration Policies and the Promotion of Genetic Testing: Empiricizing Definitional Criteria, Bolstering State Demographic Security, or Hastening the Messianic Era?. The Journal of the Middle East and Africa, 11(1), 65-85.
Rothwell, E., Lamb, B., Johnson, E., Gurtcheff, S., Riches, N., Fagan, M., ... & Johnstone, E. (2020). Patient perspectives and experiences with in vitro fertilization and genetic testing options. Therapeutic Advances in Reproductive Health, 14, 2633494119899942.
Brown, T. R. (2019). Why We Fear Genetic Informants: Using Genetic Genealogy to Catch Serial Killers. Colum. Sci. & Tech. L. Rev., 21, 1.
Contreras, J. L., Schultz, K., Teerlink, C. C., Maness, T., Meyer, L. J., & Cannon-Albright, L. A. (2020). Legal terms of use and public genealogy websites. Journal of Law and the Biosciences.
Ratcliff, C. L., Wong, B., DeFriez, J., & Kaphingst, K. (2020, May). Impact of Different Types of Uncertainty on Public Willingness to Participate in Precision Medicine Research. In Annals Of Behavioral Medicine (Vol. 54, Pp. S445-S445). Journals Dept, 2001 Evans Rd, Cary, Nc 27513 Usa: Oxford Univ Press Inc.
Dugger, C., Anderson, H. S., Miller, C. E., Wong, B., Johnson, E. P., & Rothwell, E. (2020). Assessing clinical education tools for expanded carrier screening. Journal of Genetic Counseling.
Francis, L. P., & Francis, J. G. (2017). Data reuse and the problem of group identity. In Studies in Law, Politics, and Society. Emerald Publishing Limited.
Botkin, J. R. (2020). The case for banning heritable genome editing. Genetics in Medicine, 22(3), 487-489.
Botkin, J. R. (2020). The case for banning heritable genome editing. Genetics in Medicine, 22(3), 487-489.
Botkin, J. R. (2019). Commentary: Genetic contextualism and the value of a structured process. The American journal of bioethics: AJOB, 19(1), 72.
Botkin, J. R. (2018). Should failure to disclose significant financial conflicts of interest be considered research misconduct?. Jama, 320(22), 2307-2308.
Botkin, J. R. (2019). The Bane of “Boilerplate” Language in Research Consent Forms: Ensuring Consent Forms Promote Autonomous Authorization.
Burr, J. S., Johnson, A. R., Vasenina, V., Bisping, S., Coleman, R. W., Botkin, J. R., & Dean, J. M. (2019). Implementing a Central IRB Model in a Multicenter Research Network. Ethics & human research, 41(3), 23-28.
Case, G. A., Pippitt, K. A., & Lewis, B. R. (2018). Shame. Perspectives on medical education, 7(1), 12-15.
Grosse, S. D., Prosser, L. A., & Botkin, J. R. (2019). Screening for Neonatal Hyperbilirubinemia—First Do No Harm?. JAMA pediatrics, 173(7), 617-618.
Guerrini, C. J., Botkin, J. R., & McGuire, A. L. (2019). Clarify the HIPAA right of access to individuals’ research data. Nature biotechnology, 37(8), 850-852.
Juergens, A. K., & Francis, L. P. (2018). Protecting essential information about genetic variants as trade secrets: a problem for public policy?. Journal of Law and the Biosciences, 5(3), 682-705.
Johnston, J., Lantos, J. D., Goldenberg, A., Chen, F., Parens, E., Koenig, B. A., & NSIGHT Ethics and Policy Advisory Board. (2018). Sequencing newborns: a call for nuanced use of genomic technologies. Hastings Center Report, 48, S2-S6.
National Academies of Sciences, Engineering, and Medicine. (2018). Returning individual research results to participants: guidance for a new research paradigm. National Academies Press.(Botkin, Chair)
Rothwell, E., Botkin, J. R., Cheek-O'Donnell, S., Wong, B., Case, G. A., Johnson, E., ... & Horejsi, B. (2018). An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research. AJOB empirical bioethics, 9(2), 69-76.
Rothwell, E., Johnson, E., Riches, N., & Botkin, J. R. (2019). Secondary research uses of residual newborn screening dried bloodspots: a scoping review. Genetics in Medicine, 21(7), 1469-1475.
Rothwell, E., Johnson, E., Wong, B., Rose, N. C., Latendresse, G., Altizer, R., ... & Botkin, J. R. (2019). The Use of a Game-Based Decision Aid to Educate Pregnant Women about Prenatal Screening: A Randomized Controlled Study. American journal of perinatology, 36(3), 322.