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 and Humanities, University of Utah School of Medicine
Associate Vice President for Research Integrity, University of Utah

Correspondence:
Department of Pediatrics
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

Biosketch

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Jeff Botkin is a Professor of Pediatrics at the University of Utah, an Adjunct Professor of Internal Medicine in the Division of Medical Ethics and an Adjunct Professor of Human Genetics. He is the Associate Vice President for Research Integrity at the University of Utah. He was an undergraduate at Princeton University and received his MD at the University of Pittsburgh, an MPH at Johns Hopkins University and was a fellow in Law, Ethics and Health at Johns Hopkins in affiliation with the Kennedy Institute of Ethics at Georgetown. He has over 20 years of experience in the clinical care of pediatric patients. His research is focused on the ethical, legal, and social implications of genetic technology with a particular emphasis on research ethics, genetic testing for cancer susceptibility, newborn screening, and prenatal diagnosis. Dr. Botkin is a former Chair of the Committee on Bioethics for the American Academy of Pediatrics. He is a fellow of the Hastings Center and serves on a number of federal, local, and national advisory boards including the DHHS Secretary’s Advisory Committee on Human Research Protection, the FDA Pediatric Advisory Committee, and the CDC’s Working Group on the Evaluation of Genomic Applications in Practice and Prevention. Dr. Botkin is currently Co-Chair of the Project on Medical Sequencing at the National Human Genome Research Institute. His publications include: Genetics and Criminality: The Potential Misuse of Scientific Information in Court Botkin J, McMahon W, Francis L (eds). The American Psychological Association Press, 1999; Access to the Genome: The Challenge to Equality Mehlman MJ, Botkin JR, Georgetown University Press, 1998.

Education / Training

A. B., Biology, Princeton University, Princeton, NJ, 1971 - 1975
M.D., University of Pittsburgh School of Medicine, Pittsburgh, PA, 1975 - 1979
Internship and Residency, Department of Pediatrics, University of Colorado Health Science Center, Denver, CO, 1979 - 1982
M.P.H., Resident in Preventive Medicine, Johns Hopkins School of Hygiene and Public Health, Baltimore, MD., 1986 - 1987
Fellow, Program in Law, Ethics and Health. Department of Health Policy and Management, Johns Hopkins School of Hygiene and Public Health in affiliation with the Kennedy Institute of Ethics at Georgetown University, 1987 - 1988
Certification
- Fellow, The American Academy of Pediatrics 1985
- Diplomate, The American Board of Pediatrics, 1984
- Diplomate, National Board of Medical Examiners Licensed
- State of Utah (Expired: Ohio, Maryland, Colorado)

Research Funding since 2000

Agency: Mountain States Genetics Consortium, Title: Newborn screening registry and surveillance planning project, Role: PI, Duration: 8/06 - 6/07,Funds: $193,000
Agency: Mountain States Genetics Consortium, Title: Newborn screening surveillance program, Role: Co-PI (Nicolo Longo, PI), Duration: 1/06 - 6/07, Funds: $30,000
Agency: Mountain States Genetics Consortium, Title: Stability of analytes and enzymes in stored blood spots, Role: Co-PI (Marzia Pasquali, PI), Duration: 3/05 - 2/07, Funds: $30,000
Agency: NIH, Title: Utah Human subjects research enhancement program, Role: Principal investigator, Duration: 9/1/03 - 12/31/04, Funds: $248,063
Agency: UCLA subcontract, HRSA Grant, Title: Evaluation of educational interventions for newborn screening, Role: Site Principal Investigator, Duration: 8/15/03 - 8/14/04, Funds: $188,295Agency: NIH, Title: Communication analysis of BRCA1 genetic counseling, Period: 4/01-3/03, Direct Costs: $100,000
Agency: NIH (contract), Title: Patient attitudes toward tissue banking for research, Role: Investigator, Period: 12/01 – 12/02, Funding: $15,600
Agency: NIH, Title: High Risk Breast Cancer Clinic, Role: Investigator (Saundra Buys, PI), Direct Costs: $6,461,502
Agency: HRSA, NIH, Title: Genetics in Primary Care, Role: Team Leader (PI), Proposed period: 9/00 – 9/02, Funding: $10,000
Agency: (NIH (NHGRI), Title: Genetic testing for BRCA1 mutation in an African American Kindred, Role: Co-investigator, (Anita Kinney, PI), Proposed period: 4/1/00 – 3/31/04, Direct costs: $1,563,438

Presnt Positions / Appointments

Professor of Pediatrics, Department of Pediatrics, University of Utah School of Medicine
Professor of Internal Medicine (Adjunct), Department of Internal Medicine, Division of Medical Ethics, University of Utah School of Medicine
Professor of Human Genetics (Adjunct), Department of Human Genetics, University of Associate Vice President for Research Integrity, University of Utah
Chair, Division of Medical Ethics, Department of Pediatrics, University of Utah
American Academy of Pediatrics Member, Committee on Bioethics, District VIII Representative
American Society of Law, Medicine, and Ethics, Board of Directors
Member, DHHS Secretary’s Advisory Committee on Human Research Protection,Member, DHHS Secretary’s Advisory Committee on Human Research Protection Subpart D Advisory Committee (addressing federal regulations for pediatric research)
Member, Joint Advisory Group, GenoMel consortium (international consortium for melanoma research)
Member, Ad Hoc Pediatric Ethics Advisory Committee, FDA
NIH Study Section Member, Human Genetics Study Section, ELSI subsection
Chair, Newborn Screening Advisory Committee, Utah Department of Health
Fellow (elected), The Hastings Center (2000)Co-Chair, NHGRI Project on Medical Sequencing
Member, Evaluation of Genomic Applications in Practice and Prevention Project (EGAPP), CDC, Atlanta GA
Member, NIDDK Chronic Kidney Disease in Children Study External Advisory Committee
Utah Department of Health Chronic Disease Genetics Program, Advisory Board member
Medical Advisory Board, Cord Blood Program, Intermountain Tissue Center, Salt Lake City
Advisory Board Member, ARUP Project on Expanded Newborn Screening
Advisory Board Member, Stanford Project on the Genetics of Nicotine Addiction
External Advisory Board. Center for Genetic Research Ethics and Law (CGREAL), Case Western Reserve University
Member, Alpha-One Antitrypsin Deficiency Foundation Tissue Banking Advisory Committee
Consultant: National Human Research Protection Advisory Committee (DHHS), Working Group on Third Parties

Interests

Ethical, legal, and social implications of genetic technology with a particular emphasis on research ethics, genetic testing for cancer susceptibility, newborn screening, and prenatal diagnosis.

Selected Publications since 2004

McMahon W, Baty B, Botkin J. Genetic counseling and ethical issues for autism. Amer J Med Genet 2006;142:52-7.
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.
Botkin JR. Balancing consumer advocacy and informed public policy. Kaiser Permanente Ethics Rounds 2006;16(2):3- 5.
Francis LP, Battin MP, Jacobson JA, Smith CB, Botkin JR. How infectious diseases got left out - and what this omission might have meant for bioethics. In Selgelid MJ, Battin MP, Smith CB (Eds) Ethics and Infectious Disease, 2006 Blackwell Publishing, Malden MA.
Smith CB, Battin MP, Jacobson JA, Francis LP, Botkin JR, Asplund EP, Domek GJ, Hawins B. Are there characteristics of infectious diseases that raise special ethical issues? In Selgelid MJ, Battin MP, Smith CB (Eds) Ethics and Infectious Disease, 2006 Blackwell Publishing, Malden MA.
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.
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)
“Responding to parental refusals of immunization of children” AAP Committee on Bioethics, Pediatrics 2005;115;1428-1431.
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.
Botkin JR. Informed consent for genetic research. Current Protocols in Human Genetics 2005; John Wiley and Sons,
Botkin JR. Research for newborn screening: developing a national framework. Pediatrics 2005;116:862-871.
Munger MA, Stillman J, Botkin JR. The keystone of human research protections: the institutional review board. UH Review 2005;10(1):8 – 11.
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;14:377-8652)
Botkin JR. Addressing the “petty tyranny” of IRBs. Amer J Med Genetics 2005;134(3):240-1.
Botkin JR. What ethical challenges does embryo selection pose for children? AMA News Ethics Forum, Sept 6, 2004.
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.
Beskow,, Botkin J, Daly M, Juengst 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 familial genetic research. AJMG 2004;130A:424-431.
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.
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.
“Do-not-resuscitate orders for pediatric patients who require anesthesia and surgery.” AAP Committee on Bioethics, Pediatrics 2004;114:1686-1692.

Selected National / International Presentations since 2004

“Tissue policy in academic institutions” Controversies in Research Ethics Seminar Series, the MacLean Center for Clinical Medical Ethics, University of Chicago, 12/6/06
“Newborn screening: proceed with caution.” Hot Topics in Neonatology, Annual Meeting. Washington DC, 12/4/06
“SACHRP recommendations on minimal risk research with children” PRIM&R Annual Meeting, Washington DC, 11/18/06
“Informed consent for genetic research” American Society of Clinical Oncology, Los Angeles, 10/3/06
“Ethical Issues in Genetic Testing and Screening” Jackson Lab annual genetics short course, sponsored by Johns Hopkins, Bar Harbor, Maine, 7/27/06
“Ethical and social considerations in research with dried bloodspots” 4th International DNA Sampling Conference, Montreal, CA, 6/5/06
“Psychosocial concerns in genetic testing for color cancer susceptibility” American Gastroenterology Association National Conference, Los Angeles, 5/22/06
Predictive information in the genomic age. New Mexico Bar Association seminar, Albuquerque, NM, 4/19/06
Madearis Lectures, University of Pittsburgh (Grand Rounds, Department of Pediatrics, Lecture: Center for Health Law), 4/5/06
“Newborn Screening: Toward an Ethically and Clinically Sound Program. President’s Council on Bioethics, Washington DC, 2/3/06
- “Genetic Exceptionalism” NIH Physiological Genomics of Critical Illness and Injury Symposium, NIH, 4/21/05
“Ethical issues in research involving complete sequencing” Cold Spring Harbor Genome Science Conference, 5/12/05
“Protecting human subjects in genetic research” Ethics and Genetics Symposium (EDGE), UCLA, 11/11/05
Ethical issues in genetic testing, Grand Rounds, Toronto Children’s Hospital, Toronto Canada, 12/1/04
Newborn screening technology, American Society of Bioethics and the Humanities national meeting, Philadelphia, 10/30 04
Course faculty on ethical, legal and regulatory issues in assisted reproductive technologies, American Society of Reproductive Medicine national meeting, Philadelphia, 10/16/04
Ethical issues in frozen embryos and stem cells. AAP National Conference and Exhibition, San Francisco, CA, 10/9/04
“Ethical and regulatory issues in research with children. Colorado state IRB conference, Denver, CO, 9/23/04
“Ethical issues in stored NBS specimens” National Conference of State Legislators, Salt Lake City, Utah, 7/22/04
“Ethical and regulatory issues in the use of stored NBS specimens for research” HRSA/CDC Newborn Screening Conference, Atlanta, GA, (N) 5/6/04
“Ethical implications of halfway technology” Inaugural Conference for the Social and Behavior Research Branch of the National Human Genome Research Institute, NIH, Washington DC, 2/25/04