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Recent Relevant Publications and Work

Abdul-Rahman, O. A., Rodriguez, B., Wadlinger, S. R., Slutsman, J., Boyle, E. B., Merrill, L. S., Botkin, J. . . . Moye, J., Jr. (2015). Success rates for consent and collection of prenatal biological specimens in an epidemiologic survey of child health. Birth Defects Res A Clin Mol Teratol. doi:10.1002/bdra.23455

Botkin, J. R. (2015a). Crushing Consent Under the Weight of Expectations. Am J Bioeth, 15(9), 47-49. doi:10.1080/15265161.2015.1062181

Botkin, J. R. (2015b). Waving Goodbye to Waivers of Consent. Hastings Cent Rep, 45(6), insidebackcover. doi:10.1002/hast.520

Botkin, J. R., Belmont, J. W., Berg, J. S., Berkman, B. E., Bombard, Y., Holm, I. A., . . . McInerney, J. D. (2015). Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents. Am J Hum Genet, 97(1), 6-21. doi:10.1016/j.ajhg.2015.05.022

Botkin, J.R. & Rothwell, E. (2016). Whole genome sequencing and newborn screening. Clinical Genetic Medicine Report (accepted). Curr Genet Med Rep. 2016 Mar 1;4(1):1-6. Epub 2016 Feb 1.

Botkin JR, Rothwell E, Anderson RA, Rose NC, Dolan SM, Kuppermann M, Stark LA, Goldenberg A, Wong B. (2016). Prenatal education of parents about newborn screening and residual dried blood spots: A randomized clinical trial. JAMA Pediatrics, 170(6):543-9.

Botkin, J. R., Rothwell, E., Anderson, R., Stark, L. A., & Mitchell, J. (2015). Public attitudes regarding the use of electronic health information and residual clinical tissues for research. J Community Genet, 6(2), 183. doi:10.1007/s12687-015-0216-6

Carere DA, Kraft P, Kaphingst KA, Roberts JS, Green RC. Consumers report lower confidence in their genetics knowledge following direct-to-consumer personal genomic testing. Genetics in Medicine, in press. [PMCID: PMC Journal – In Process]

Cardell, B., Clark, L., & Pett, M. A. (2015). Measurement Considerations for Achieving Equity in Research Inclusion for Transition-aged Youth with Disabilities. Journal of Pediatric Nursing, 30, 36-44.

Edwards, JG, Feldman G, Goldberg J, Gregg AR, Norton ME, Rose NC, Schneider A, Stoll K, Wapner R, Watson MS. (2015). Expanded Carrier Screening in Reproductive Medicine: Points to Consider--A Joint Statement of the American College of Medical Genetics and Genomics, American College of Obstetricians and Gynecologists, National Society of Genetic Counselors, Perinatal Quality Foundation, and Society for Maternal-Fetal Medicine.Obstet Gynecol 2015;125:653–62.

Finan, C., Nasr, S. Z., Rothwell, E., & Tarini, B. A. (2015). Primary care providers' experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila), 54(1), 67-75. doi:10.1177/0009922814545619

Francis, LP & Francis, JG. Contract offered; expected date of completion fall 2015. Sustaining Surveillance: the Ethics and Politics of Health Data Collection and Use. Springer-Verlag.

Francis, L.P., ed. Under contract; expected date of completion May 2015. Handbook on Reproductive Ethics, Oxford University Press

Goldenberg, A. J., Maschke, K. J., Joffe, S., Botkin, J. R., Rothwell, E., Murray, T. H., . . . Rivera, S. M. (2015). IRB practices and policies regarding the secondary research use of biospecimens. BMC Med Ethics, 16, 32. doi:10.1186/s12910-015-0020-1

Hartz SM, Olfson E, Culverhouse R, Cavazos-Rehg P, Chen L-S, DuBois J, Fisher S, Kaphingst K, Kaufman D, Plunk A, Ramanarine S, Solomon S, Saccone NL, Bierut LJ. Return of individual genetic results in a high-risk sample: enthusiasm and positive behavior change. Genetics in Medicine, in press. [NIHMSID: NIHMS 616537]

Holton, A. E., Canary, H., & Wong, B. (2016). Business and breakthrough: Framing (expanded) genetic carrier screening for the public. Health Communication. (in press)

Griffey RT, Carpenter CR, Gross M, Kinsella Y, Goodman MS, McGowan LD, Kaphingst KA. Impact of teach-back on comprehension of discharge instructions and satisfaction among emergency patients with limited health literacy: a randomized, controlled study. Journal of Communication in Healthcare, in press. [PMCID: PMC Journal – In Process]

He S, Botkin JR, Hurdle JF. An analysis of information technology adoption by IRBs of large academic medical centers in the United States. Journal of Empirical Research on Human Research Ethics (in press)

Higa, L. A., McDonald, J., Himes, D. O., & Rothwell, E. (2015). Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis. J Community Genet. doi:10.1007/s12687-015-0254-0

Kaphingst KA, Blanchard M, Milam L, Pokharel M, Elrick A, Goodman MS. Relationships between health literacy and genomics-related knowledge, self-efficacy, perceived importance, and communication in a medically underserved population. Journal of Health Communication 2016; 21:58-68.

Kaphingst KA, Goodman MS. Importance of race and ethnicity in individuals’ use of and responses to genomic information. Personalized Medicine 2016; 13(1):1-4.

Kaphingst KA, Ivanovich J, Biesecker BB, Dresser R, Seo J, Dressler LG, Goodfellow PJ, Goodman MS. Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age. Clinical Genetics 2016; 89(3):378-384. [PMCID: PMC4856148]

Lassetter, J. H., Clark, L., Morgan, S., Brown, L. B., VanServellen, G., Duncan, K., Hopkins, B.S., Alleger, B., Curtis, S., Muffler, A., Coleman, J., Miyamoto, S. Z., Mounga, V., Goodwill, R., Cummings, J., & Hanohano, B. (2015). Health Literacy Among Adult Native Hawaiians and Pacific Islanders in the U.S. Public Health Nursing, doi: 10.1111/phn.12155. Available at http://dx.doi.org/10.1111/phn.12155

Martin, M. M., Rothwell, E. W., Venne, V. L., & Foster, N. L. (2015). Perceptions of tissue storage in a dementia population among spouses and offspring. J Genet Couns, 24(3), 503-511. doi:10.1007/s10897-015-9818-8

Rivera, S. M., Goldenberg, A., Rosenthal, B., Aungst, H., Maschke, K. J., Rothwell, E., . . . Joffe, S. (2015). Investigator Experiences and Attitudes About Research With Biospecimens. J Empir Res Hum Res Ethics, 10(5), 449-456. doi:10.1177/1556264615610199

Romero ST, Geiersbach KB, Paxton CN, Rose NC, Schisterman EF, Branch DW, Silver RM. Differentiation of Genetic Abnormalities in Early Pregnancy Loss. Ult Obstet Gynecol. 2015, Vol.45(1), pp.89-94

Rose NC. Carrier Screening in Reproductive Medicine. Prenatal Diagnosis. 2015. In press.

Rose, NC. Screening for Aneuploidy. American College of Obstetricians and Gynecologists Practice Bulleting (in press), 2015.

Rose NC and Mercer B. Screening for Fetal Aneuploidy. Practice Bulletin #163. American College of Obstetricians and Gynecologists. Obstet Gynecol. 2016. In Press.

Rose NC and Wick M. Current Recommendations for Screening for Mendelian Disorders. Seminars in Perinatology. 2016; 40(1):23-28.

Rothwell, E., Anderson, R., & Botkin, J. R. (2015). Deliberative Discussion Focus Groups. Qual Health Res. doi:10.1177/1049732315591150

Rothwell E, Botkin JR. Whole genome sequencing and newborn screening. Current Genetic Medicine Reports 2016 Mar 1;4(1):1-6.

Rothwell, E., Maschke, K. J., Botkin, J. R., Goldenberg, A., Murray, T. H., & Rivera, S. M. (2015). Biobanking Research and Human Subjects Protections: Perspectives of IRB Leaders. Irb, 37(2), 8-13.

Rothwell, E., Wong, B., Anderson, R., & Botkin, J. (2016). The influence of education on public trust and consent preferences with residual newborn screening dried blood spots. Journal of Empirical Research on Human Research Ethics, epub July 6, doi: 10.1177/1556264616656976

Tabery, J (2015), “Why Is Studying the Genetics of Intelligence So Controversial?”, The Hastings Center Report 45: S9-S14.

Tabery, J. (2015), “Nature versus Nurture”, in The Eugenics Archive. Available online at: http://eugenicsarchive.ca/discover/encyclopedia/535eed0d7095aa0000000241.

Tabery, J. (2105) “Brain Stimulation Can Alter Our Desire to Punish Wrongdoers”, NewScientist, 15 September, 2015. Available online at: https://www.newscientist.com/article/dn28179-brain-stimulation-can-alter-our-desire-to-punish-wrongdoers/

Tabery, James (2015), “Author’s Reply: Considerations of Context, Distractions by Politics, and Evaluations of Evidence”, International Journal of Epidemiology 44: 1132-1136.

Tabery, James (2015), “Debating Interaction: The History, and an Explanation”, International Journal of Epidemiology 44: 1117-1123. (This is a target article, with commentaries by Sir Michael Rutter, Neven Sesardic, and Marcus Munafò, and my reply.)

Tvrdik T, Mason D, Dent KM, Thornton L, Hornton SN, Viskochil DH, Stevenson DA. Stress and coping in parents of children with Prader-Willi syndrome: Assessment of the impact of a structured plan of care. Am J Med Genet A. 2015 May;167A(5):974-82. doi: 10.1002/ajmg.a.36971. Epub 2015 Mar 8. PubMed PMID: 25755074.

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Recent Relevant Publications and Work