The Division of Medical
Ethics and Humanities

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Jeffrey R. Botkin, M.D., M.P.H.

Professor of Pediatrics, Department of Pediatrics
Adjunct Professor of Medicine, Department of Internal Medicine - Division of Medical Ethics, University of Utah School of Medicine
Associate Vice President for Research Integrity, University of Utah
Correspondence:
University of Utah School of Medicine
Research Administration Building
75 South 2000 East #108
Salt Lake City, Utah 84112-8930
Phone: (801) 581-7170
Email address: jeffrey.botkin@hsc.utah.edu
Go to The Dept. of Pediatrics at the University of Utah School of Medicine

Current Appointments:

  1. Member, Ethics Committee, University Hospital
  2. Member, Huntsman Cancer Institute, Clinical Research Executive Committee
  3. Director of Bioethics and Clinical Policy, Huntsman Cancer Institute
  4. Member, University of Utah Health Science Center Institutional Review Board
  5. Member, University Hospital Risk Management Committee
  6. Member, Executive Committee, IHC Genetics Institute
  7. Chair, Academic Appeals/Misconduct Committee, Health Science Center
  8. Chair, University Research Regulation Compliance Committee / NIH site review
  9. Member, PCMC Foundation Clinical care Research Committee
  10. Section VIII representative, Committee on Bioethics, American Academy of Pediatrics
  11. Member, DHHS Secretary's Advisory Committee on Human Research Protection, 2006 --
  12. Member, DHHS Secretary's Advisory Committee on Human Research Protection Subpart D Advisory Committee (addressing federal regulations for pediatric research) 2003 - 2006
  13. Member, Joint Advisory Group, GenoMel consortium (international consortium for melanoma research) 2006 --
  14. Member, Ad Hoc Pediatric Ethics Advisory Committee, FDA (2005 - )
  15. NIH Study Section Member, Human Genetics Study Section, ELSI subsection, 2006 --
  16. Co-Chair, NHGRI Project on Medical Sequencing, 2005 -
  17. Member, Evaluation of Genomic Applications in Practice and Prevention Project (EGAPP), CDC, Atlanta GA, 2005 --
  18. Member, NIDDK Chronic Kidney Disease in Children Study External Advisory Committee, 2004 -
  19. Utah Department of Health Chronic Disease Genetics Program, Advisory Board member, 2004 -
  20. Medical Advisory Board, Cord Blood Program, Intermountain Tissue Center, Salt Lake City (2002 -- ) o Advisory Board Member, ARUP Project on Expanded Newborn Screening, 2003 -
  21. Advisory Board Member, Stanford Project on the Genetics of Nicotine Addiction, 2003 -
  22. External Advisory Board. Center for Genetic Research Ethics and Law (CGREAL), Case Western Reserve University, 2004 --
  23. Member, Alpha-One Antitrypsin Deficiency Foundation Tissue Banking Advisory Committee (2000 -- )
  24. Consultant: National Human Research Protection Advisory Committee (DHHS), Working Group on Third Parties (2001 - )
  25. Advisory Committee member, Utah Birth Defects Registry, Utah Department of Health, (1999 -- )

Editorial Activities

  • Referee for: New England Journal of Medicine, JAMA, Pediatrics, Journal of Pediatrics, American Journal of Human Genetics, The Hastings Center Report, The Kennedy Institute of Ethics Journal, IRB: Ethics and Human Research, Archives of Pediatric and Adolescent Medicine, Biologic Psychiatry, American Journal of Obstetrics and Gynecology, Journal of the National Cancer Institute, Community Genetics, Oxford University Press, Health Psychology, Bipolar Disorders, Yearbook Medical publishers, Journal of Clinical Ethics, Clinical Pediatrics, and Nature Genetic Reviews

Recent Publications

  1. Schenkenberg T, Kochenour N, Botkin J. Ethical considerations in the care of the VIP. Journal of Bioethics 2006 (in press)
  2. Botkin JR. Parental permission for research in newborn screening. The Hastings Center Report 2006 (in press)
  3. McMahon W, Baty B, Botkin J. Genetic counseling and ethical issues for autism. Amer J Med Genet 2006;142:52-7.
  4. Botkin JR, Clayton EW, Fost NC, Burke W, Murray TH, Baily MA, Wilfond B, Berg A, Ross LF. Newborn screening technology: proceed with caution. Pediatrics 2006;117:1793-1799.
  5. Francis LP, Battin MP, Jacobson JA, Smith CB, Botkin J. How infectious diseases got left out - and what this omission might have meant for bioethics. Bioethics 2005;19:307 - 22.
  6. Botkin JR. Informed consent for genetic research. Current Protocols in Human Genetics 2005; John Wiley and Sons,
  7. Botkin JR. Research for newborn screening: developing a national framework. Pediatrics 2005;116:862-871.
  8. Munger MA, Stillman J, Botkin JR. The keystone of human research protections: the institutional review board. UH Review 2005;10(1):8 - 11.
  9. Ellington, L., Roter, D Dudley, W.N., Baty, B. J., Upchurch, R., Larson, S.,., Wylie, J.E., Smith, K.R., Botkin, J.R. Communication analysis of BRCA1 Genetic Counseling. Journal of Genetic Counseling 2005;14:377-86
  10. Gross SD, Boyle CA, Botkin JR, Comeau AM, Kharrazi M, Rosenfeld M, Wilfond BS. Newborn screening for cystic fibrosis: Evaluation of benefits and risks and recommendations for state newborn screening programs. MMWR 2004;53(RR13): 1-36.
  11. Beskow A, Austin M, Botkin J, Daly M, Juenst E, Lehmann L, Merz J, Pentz R, Press N, Ross L, Susswein L, Sugarman J, Terry S, Burke W. Ethical issues in identifying and recruiting participants for familal research. AJMG 2004;130A:424-431..
  12. Smith CB, Battin MP, Jacobson JA, Francis LP, Botkin JR, Asplund EP, Domek GJ, Hawkins B. Are there characteristics of infectious diseases that raise special ethical issues? Developing World Bioeth. 2004 May:4(1):1-16.
  13. Smith KR, Ellington L, Chan AY, Croyle RT, Botkin JR. Fertility intentions following testing for a BRCA1 mutation. Cancer Epidemiol Biomarkers Prev 2004;13:733-40.
  14. Botkin JR. Preventing exploitation in pediatric research. American Journal of Bioethics 2003;3(4)"31-33.
  15. Burke W, Acheson L, Botkin JR, Bridges K, et. al. Genetics in primary care: A USA Faculty Development Initiative. Community Genetics 2002;5:138-46.
  16. Wrongful life and wrongful birth: ethical and legal issues in prenatal diagnosis. Florida State University Law Review 2003;30(2)265-293.
  17. Venne V, Botkin J, Buys S. Professional opportunities and responsibilities in the provision of genetic information to children relinquished for adoption. Am J Med Genet. 2003;119A:41-46.
  18. Botkin JR, Smith KS, Croyle RT, Baty BJ, Wylie JE, Dutson D, Chan A, Hamann HA, Lerman C, McDonald J, Venne V, Ward JH, Lyon E. Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing. AJMG 2003;118A:201-209.
  19. Wylie JE, Skith KS, Botkin JR. Effects of spouses on distress experienced by BRCA1 mutation carriers over time. AJMG 2003;119C:35-44.
  20. Green MJ, Botkin JR. Predictive genetic testing in clinical practice: Is it different than other common tests? Annals of Internal Medicine 2003;138:571-5. Smith KR, Zick CD, Mayer RN, Botkin JR. Voluntary disclosure of BRCA1 mutation test results. Genetic Testing 2002;6(2):89-92
  21. Botkin JR. Protecting the privacy of family members in survey and pedigree research JAMA 2001;285:207-211.
  22. Hamann HA, Croyle RT, Smith KR, Martinez BN, McCance KL, Botkin JR. Interest in support groups among individuals tested for a BRCA1 gene mutation. Journal of Psychosocial Oncology 2000;18(4)15-38.
  23. Zick CD, Smith KR, Mayer RN, Botkin JR. Genetic testing, adverse selection, and the demand for life insurance. AJMG 2000;93:29-39.
  24. Hamann HA, Croyle RT, Venne VL, Baty B, Smith KR, Botkin JR. Attitudes toward the genetic testing of children among individuals tested for a BRCA1 gene mutation. AJMG 2000;92:25-32.
  25. Harrison AM, Botkin JR. Can pediatricians define and apply the concept of brain death? Pediatrics , 1999; 103(6): e82.
  26. Botkin JR, McMahon W, Smith K, Nash J. Privacy and confidentiality in the publication of pedigrees: a survey of investigators and biomedical journals. JAMA 1998; 279:1808-1812.
  27. Smith KR, West J, Croyle R, Botkin JR. The familial context of genetic testing for cancer susceptibility: the moderating effect of siblings' test results on psychological distress following BRCA1 mutation testing. Cancer Epidemiology, Biomarkers and Prevention (in press).
  28. Botkin JR. Ethical issues and practical problems in preimplantation genetic diagnosis. Am J Law, Med and Ethics. 1998;26(1) (in press).

Books and Book Chapters

  1. Botkin JR, Munger M, Shea P, Coffin C, Mineau G. Management of Human Tissue Resources for Research in Academic Medical Centers: Points to Consider. In Kulakowski & Chronister (eds) Research Administration and Management, Sudbury MA, Jones and Bartlett Publishers, 2006.
  2. Santelli J, Geller G, Chen D, Speers M, Botkin J, Laswell S. Recruitment of Pregnant, Minor Adolescents and Minor Adolescents at Risk of Pregnancy into Longitudinal, Observational Research: the Case of the National Children's Study. in Ethical Issues in Pediatric Research. Kodish (Ed).
  3. Botkin JR. Informed consent for acquisition of tissues in household surveys. In Collecting Biological Indicators and Genetic Information in Household Surveys. National Academy of Medicine Press 2000.
  4. Botkin JR, Wrongful life and wrongful birth actions In the Encyclopedia of Ethics, Legal, and Policy Issues in Biotechnology, John Wiley and Sons, 2000.
  5. Botkin JR. Line drawing: developing professional standards for prenatal diagnosis. In Parens E. Asch A (eds) Prenatal Testing and Disability Rights. Washington, DC, Georgetown University Press, 2000: 288-307.
  6. Genetics and Criminality: perspectives from Science, Philosophy and Law, Botkin J, McMahon W, Francis L (eds). The American Psychological Association Press 1999.
  7. Botkin J. Ethical and Legal Issues in Genetic Testing for Cancer Susceptibility, in Shaw G (ed) Cancer Genetics for the Clinician, Kluwer Academic/Plenum Press 1999;189-202.
  8. CD, Mayer RN, Botkin JR. Genetic testing and adverse selection in the market for life insurance: preliminary findings for the BRCA1 gene mutation. In Genetic Information: Acquisition, Access and Control. Thompson AK, Chadwick RF (Eds) Kluwer Academic/ Plenum Publishers, New York, 1999: 57-70.
  9. Mayer RN, Smith KR, Zick CD, Botkin JR. Coercion, control and consequences in genetic testing: views on insurance among tested individuals and the general public. In Genetic Information: Acquisition, Access and Control. Thompson AK, Chadwick RF (Eds) Kluwer Academic/ Plenum Publishers, New York, 1999: 41-56.
  10. Access to the Genome: The Challenge of Equity, Melman MJ, Botkin JR, Georgetown University Press, 1998.
  11. Botkin JR. Applying ethical prinicples to clinical decision making. In Kliegman R, Nieder ML, Super DM (Eds) Practical Strategies in Pediatric Diagnosis and Therapy. W.B. Saunders Co. 1996.
  12. Murray TH, Botkin JR. Ethical issues in genetic testing and screening. The Encyclopedia of Bioethics. (Reich W, ed) MacMillan Library Reference 1995.
  13. Botkin JR. Ethical issues in male circumcision. The Encyclopedia of Bioethics (Reich W, ed) MacMillan Library Reference 1995.

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