CURRICULUM VITAE - University of Utah



CURRICULUM VITAEJEFFREY R. BOTKIN, M.D., M.P.H.May 2015Personal InformationBirth:March 13, 1953 Pittsburgh, PACitizenship: U.S.A.Address:Home: 2550 Broken Hill DrivePark City, Utah 84098Office: Research Administration Building75 South 2000 East Room 108Salt Lake City, Utah 84112-8930Telephone:Home:(435) 649-0055Office:(801) 581-7170Cell: (435) 513-5081E-mail:Jeffrey.botkin@hsc.utah.eduMarital Status:Married (Paula Botkin), two childrenEducation:1971 - 1975A. B., BiologyPrinceton UniversityPrinceton, NJ1975 - 1979M.D., University of Pittsburgh School of MedicinePittsburgh, PA1979 - 1982Internship and ResidencyDepartment of PediatricsUniversity of Colorado Health Science CenterDenver, CO1986 - 1987M.P.H., Resident in Preventive Medicine, Johns Hopkins School of Hygiene and Public Health,Baltimore, MD.1987 - 1988Fellow, Program in Law, Ethics and Health. Department of Health Policy and ManagementJohns Hopkins School of Hygiene and Public Health.in affiliation with the Kennedy Institute of Ethics at Georgetown UniversityLicensure and Board CertificationFellow, The American Academy of Pediatrics 1985Diplomate, The American Board of Pediatrics, 1984Diplomate, National Board of Medical ExaminersLicensed, State of Utah (Expired: Ohio, Maryland, Colorado)Professional ExperienceA. Academic Appointments1982 - 1986Adjunct Assistant/Associate Clinical Professor of PediatricsDepartment of PediatricsUniversity of Colorado Health Science CenterDenver, CO1987 - 1988Fellowship in Law, Ethics and HealthDepartment of Health Policy and ManagementJohns Hopkins School of Hygiene and Public Health1988 - 1992Assistant Professor of PediatricsDepartment of PediatricsCase Western Reserve University1988 - 1992Assistant Professor of Biomedical EthicsThe Center for Biomedical EthicsCase Western Reserve University School of Medicine1992 - 1999Associate Professor of PediatricsDepartment of PediatricsUniversity of Utah School of MedicineTenure awarded 19971992 - 1999Associate Professor of Internal Medicine (Adjunct)Division of Medical Ethics University of Utah School of Medicine1999 - Professor of PediatricsDepartment of PediatricsUniversity of Utah School of Medicine1999 - Professor of Internal Medicine (Adjunct)Department of Internal MedicineDivision of Medical EthicsUniversity of Utah School of Medicine2001 -- Professor of Human Genetics (Adjunct)Department of Human GeneticsUniversity of Utah2000 Visiting ScholarStanford University Program in Genomics, Ethics and SocietyStanford UniversityAssociate Vice President for Research Integrity University of Utah2003 - Chair, Division of Medical Ethics, Department of Pediatrics, University of Utah2009 - Chair, Division of Medical Ethics and Humanities, Department of Internal Medicine, University of UtahB. Medical School and Hospital Appointments1982 - 1986Pediatrician (Private Practice)Boulder Medical CenterBoulder, CO1986 - 1988Staff Pediatrician, Independent DivisionFrancis Scott Key Medical CenterJohns Hopkins Medical InstitutionsBaltimore, MD1988 - 1992Active Staff, Department of PediatricsCleveland Metropolitan General Hospital1990 - 1992Coordinator for Clinical Ethics InstructionCenter of Biomedical EthicsCWRU School of Medicine1990 - 1992Student Clerkship DirectorDepartment of PediatricsCleveland Metropolitan General Hospital1992 - Active Staff, Department of PediatricsPrimary Children’s Medical CenterUniversity Hospital1992 - 2000Medical Director, Medical/Surgical UnitPrimary Children’s Medical CenterSalt Lake City, UT1992 - 1999Director, Genetic Science in Society Program (ELSI Core)Center for Human Genome ResearchUniversity of Utah1999 -2003Director of Bioethics and Clinical PolicyHuntsman Cancer InstituteUniversity of UtahC. Editorial ExperienceEditorial Board: American Journal of Medical Genetics, (1995 - 2004),Clinical Pediatrics (1989 - 1995)Guest Editor (with James Sorenson) Seminars in Medical Genetics, American Journal of Medical Genetics “Genetic Testing and the Family” 2003;119CSection Editor: Comprehensive Pediatrics textbook, L Osborn, L First, T DeWitt Editors, Harcourt Publishing 2004Referee for:New England Journal of MedicineJAMAPediatricsThe LancetJournal of PediatricsAmerican Journal of Human GeneticsScienceThe Hastings Center ReportMilbank QuarterlyThe Kennedy Institute of Ethics JournalGenetics in MedicineIRB: Ethics and Human ResearchArchives of Pediatric and Adolescent Medicine Biologic PsychiatryAmerican Journal of Obstetrics and Gynecology Journal of the National Cancer Institute Community GeneticsOxford University PressHealth PsychologyBipolar DisordersYearbook Medical PublishersJournal of Clinical EthicsClinical PediatricsNature Genetic ReviewsJournal of Chemistry and Laboratory Medicine?Abstract reviewer: APS/SPR/APA Pediatric Academic Societies Annual Meeting, 1995, 1996, 1997, 1998Reviewer for the National Cancer Institute’s Director’s Consumer Liaison GroupAbstract Reviewer for “A Decade of ELSI Research” conference, ELSI Program, NHGRI, 1/01.Manuscript reviewer: MSJAMA 2002 and 2003 John Conley Ethics Essay Contest for Medical StudentsD. Research AwardsSubmittedAgency: NIHTitle: R01 Video Informed Consent Information (VICI) for Residual Bloodspot Biobanking (Botkin/Rothwell Co-PIs)Description: To develop and formally assess a video informed consent tool for biobanking of residual bloodspots for the Michigan Biotrust Role: Co-PIProposed Funding: $2,199,0265Study Section: February 2015 = 9th percentileFundedAgency NIHTitle: R21 Improved Prenatal Genetic Screening Decision Making through Game Technology (Rothwell PI)Description: This project will develop and conduct a preliminary evaluation of a game application for pregnant couples to enhance education and clarify values regarding prenatal screening Role : Co-InvestigatorProposed funding: $272,000Agency: NIHTitle: UL1RR025764-01 University of Utah Center for Clinical and Translational ScienceRole: Director of Ethics and Regulator Core (PI McClain D) Duration: 10/2013 – 9/2018Funding: $4,513,700 annual direct costsAgency NIH 1P20HG007249-01Title: The Utah Center for Excellence in the Ethical, Legal, and Social Implications of GeneticsDescription: This is a P20 funded grant to fund a center of excellence that will focus on prenatal screening and newborn screening issuesRole: PIProposed funding: $525,000 (3 years)Agency NIH #HG005691Title: Advancing Collaborative Genetic Research: Ethical and Policy ChallengesDescription: This CWRU project will evaluate policies and practices of informed consent for tissue banking at CTSA institutions and develop recommendations for uniform policiesRole: Investigator (Rivera, PI)Proposed amount: $1.9 millionDuration: 3 yearsAgency: NIH 1R01HD062762Title: R01 the efficacy and impact of prenatal education about newborn screeningDescription: This project will design and evaluate new educational tools for parents regarding newborn screeningRole: PIProposed Amount: $2.8 million direct and indirectDuration: 4 yearsAgency NIHTitle: Pilot newborn screening project for identification and prospective follow-up of infants with spinal muscular atrophyDescription: The project will design and implement a pilot study of SMA newborn screening, including an assessment of ethical, regulatory, and psychosocial issuesRole: Co-investigator at 0.10 FTE (Swoboda, PI)Proposed amount: $1.66 million direct and indirectDuration: 5 yearsAgency: D1BRH20425-01-00Title: Congressionally-Mandated Health Information Technology Grant: The Utah Biobank InitiativeRole: Director, Governance and Community Engagement Cores (Mitchell PI)Duration: 9/10 – 8/12Funding: $1.6 millionAgency: NIH/NHGRI 1 R01 HD058854-01Title: Methods for promoting public dialogue on the use of residual newborn screening samples for research.Role: PIDuration: 9/08 – 6/11Funding: $1.2 million direct costsAgency: NIHTitle: UL1RR025764-01 University of Utah Center for Clinical and Translational ScienceRole: Director of Ethics and Regulator Core (PI McClain D) Duration: 05/19/2008 – 4/30/13Funding: $4,513,700 annual direct costs?Agency: NICHDTitle: The National Children’s StudyRole: Chair, Utah ethics and human subjects working groupDuration: 20 year study, annual renewalAgency: Mountain States Regional Genetics CollaborativeTitle: Newborn screening registry and surveillance planning project Role: PIDuration: 8/06 – 9/07Funds: $193,000Agency: Mountain States Regional Genetics CollaborativeTitle: Newborn screening surveillance programRole: Co-PI (Nicolo Longo, PI)Duration: 1/06 – 6/07Funds: $30,000Agency: Mountain States Regional Genetics CollaborativeTitle: Stability of analytes and enzymes in stored blood spotsRole: Co-PI (Marzia Pasquali, PI)Duration: 3/05 – 2/07Funds: $30,000Agency: NIHTitle: Utah Human subjects research enhancement programRole: Principal investigator Duration: 9/1/03 – 12/31/04Funds: $248,063Agency: UCLA subcontract, HRSA GrantTitle: Evaluation of educational interventions for newborn screeningRole: Site Principal InvestigatorFunds: $188,295Duration: 8/15/03 – 8/14/04Agency: NIH (contract)Title: Patient attitudes toward tissue banking for researchRole: InvestigatorPeriod: 12/01 – 12/02Funding: $15,600Agency: NIHTitle: Communication analysis of BRCA1 genetic counselingRole: Investigator (Lee Ellington, PI)Period: 4/01-3/03Direct Costs: $100,000Agency: NIHTitle: High Risk Breast Cancer ClinicRole: Investigator (Saundra Buys, PI)Period: Direct Costs: $6,461,502Agency: HRSA, NIHTitle: Genetics in Primary CareRole: Team Leader (PI)Proposed period: 9/00 – 9/02Funding: $10,000Agency: (NIH (NHGRI))Title: Genetic testing for BRCA1 mutation in an African American KindredRole: Co-investigator, (Anita Kinney, PI)Proposed period: 4/1/00 – 3/31/04Direct costs: $1,563,438NIH (NHGRI) HGO 1966-02Title: Book proposal “The Transparent Womb: Prenatal Diagnosis and the Biologic Selection of Children”Role: Principle InvestigatorProposed period: 10/99 - 9/01Proposed amount: $257,000ID 1U24 CA78174 (NCI/NHGRI)Title: Rocky Mountain Cancer Genetics CoalitionRole: Investigator (Ray White, PI)Period: 3/1/98-2/28/03Total funds: $4,605,989ID 1R13 HG 01651 (NHGRI)Title: Ensuring confidentiality in the publication of pedigreesRole: Principal Investigator Period: 7/97 - 6/98Total funds: $71,515?ID Number R01 CA63681 (NCI)Title: Behavioral and psychosocial effects of BRCA1 testing.Role: Principal Investigator Total Project Period: 4/94 - 4/98Total Direct Costs: $1,092,077ID Number R01 CA63681 (NCI- competitive supplement)Title: Behavioral and psychosocial effects of BRCA1 testing in Ashkenazi JewsRole: Principal InvestigatorTotal Project Period: 10/96 - 10/98Total Direct Costs: $100,000ID Number R01 CA63681 (NCI - competitive supplement)Title: Competitive Supplement to "Behavioral and Psychosocial Effects of BRCA1 Testing"Role: Principal Investigator Total Project Period: 9/95 -- 8/96Total Direct Costs: $70,142ID Number R03-CA70669 (NIHGR-NCI) Title: Adverse Selection, Life Insurance and Genetic TestingRole: Investigator (K. Smith PI)Total Project Period: 10/95 -- 9/97Total Direct Costs: $100,770?ID Number RO3 HG01213 (NIHGR)Title: Psychological Impact of Parental Genetic Testing on Adolescent Daughters in High Risk FamiliesRole: Co- Investigator (Bonnie Flick, PI)Total Project Period: 9/94 -- 9/96Total Direct Costs: $99,264ID Number: 2 P50 HG00199 (NIHGR)Title: University of Utah Center for Human Genome ResearchRole: Director of Ethical, Legal and Social Implications (ELSI) Core of Utah Center for Human Genome Research (PI: Ray Gesteland, Ph.D.)Total Project Period: 4/95 - 4/98Total Direct Costs: (ELSI Core only): $340,000 ?ID Number: 1-T32-HG00042Title: Human Genome Science Training GrantRole: Track Coordinator (R. Weiss, P Cartwright PI's)Total Project Period: 6/95 - 9/00Total Direct Costs: $1,277,217?ID Number R13MH52227 (NIHGR)Title: Genetic Testing and Screening for Mental Health DisordersRole: Principal InvestigatorTotal Project Period: 4/94 - 4/95Total Direct Costs: $35,000?ID Number R01HG00683-02 (NIHGR)Title: Access to the Genome: Justice at the Frontier of Science. . Role: Co-investigator (PI:Maxwell J.Mehlman, CWRU School of Law)Total Project Period: 7/92 - 7/94Total Direct Costs: $306,800.Agency: Ohio Board of Regents Research Initiation GrantTitle: Attitudes of pregnant women towards carrier screening for cystic fibrosis.. Role: Principal InvestigatorProject Period: 1/90 -- 1/92 Support: $4800.Administration1984 - 1985Member, Executive CommitteeUnited Medical Staff of Boulder1984 - 1985Chairman, Department of PediatricsUnited Medical Staff of Boulder1984 - 1986Chairman and Founder, Bioethics Advisory BoardUnited Medical Staff of Boulder1987 - 1988Assistant to the Chairman, Ethics CommitteeJohns Hopkins Hospital1989 - 1992 Staff Health CommitteeCleveland Metropolitan General Hospital1989 - 1992 Chair, Medical Ethics CommitteeCleveland Metropolitan General Hospital1991 - 1992 Chair, Ad Hoc Committee on HIV Positive StaffMetroHealth Medical Center1991 - 1992 Ad Hoc Clerkship CommitteeMetroHealth Medical Center1991 - 1992 Primary Care Clerkship Committee Case Western Reserve School of Medicine1991 - 1992 Planning Committee, Residency in Urban Child HealthRainbow Babies and Children’s HospitalUniversity of Utah Committees1994 -- 2002Member, Promotions, Retention and Tenure Committee, Department of Pediatrics, Associate Chair 1998 -- 20021995 -- 1996Member, Skills Subcommittee of the Curriculum Reform Committee, University of Utah School of Medicine1997 --1998Member, Ad Hoc Curriculum Reform Committee, University of Utah School of Medicine1997 -- 2000Member, Education Committee, Department of Pediatrics1998 -- 1999Member, Search Committee for Neonatology Division Chief, Department of Pediatrics1998 -- 2001Member, School of Medicine Fourth Year Curriculum/Promotions Committee.1998 -- 2001Member, Huntsman Cancer Institute, Clinical Research Executive Committee2001 -- 2010Member, University of Utah Health Science Center Institutional Review Board, Vice-Chair (2001 – 2002)2001 -- 2003IRB/Human Research Subjects Misconduct Panel2000 -- 2001 Chair, University of Utah Ad Hoc Advisory Committee on Human Tissue Resources, (Final Report 12/01)2001 -- 2002Appropriate treatment of medical students, ad hoc committee, School of Medicine2001 - - 2010Chair, Academic Appeals/Misconduct Committee, Health Science Center2002 -- 2003HIPAA Governance Committee, Health Science Center2002 Chair, University Research Regulation Compliance Committee/NIH site review2002-- 2003 Member, Ethics Committee, University Hospital2003 - 2011Member, Executive Committee, IHC Genetics Institute2002 – 2003Chair, Search Committee, Genetic Counseling Training Program2006 – 2009 Chair, University Institutional Conflict of Interest policy committee2007 - 2009Chair, Task Force for the Protection and Support of Faculty and Staff Involved in Research (response to animal rights activism)2008 -- 2011Co- Chair, Ad Hoc Biospecimen Management CommitteePrimary Children’s Medical Center Committees1993 -- 2005Chair, Bioethics Committee1995 – 2001 Member, PCMC Institutional Review Board, 1993 – 1998Chair, Medical/Surgical Unit QA Committee2001 – 2002Member, Pastoral Care Committee2002 -- 2005Member, PCMC Foundation Clinical Care Research CommitteeProfessional Community ActivitiesProfessional Societies/ Positions:American Academy of PediatricsMember, Committee on Bioethics, District VIII Representative (1996 - 2005)Chair, Committee on Bioethics (2001 -2005)Member, Epigenetics Leadership Group, AAP Strategic Initiative (2012 - )American Society of Human GeneticsMember, Social Issues Committee (2000 - 2003)Chair, ad hoc Work Group on Genetic Testing in Children (2013 - )American College of Obstetrics and GynecologyAAP Liaison member, Committee on Ethics (2001 -- 2005)Society for Health and Human ValuesAnnual Program Committee Chair, 1991-1992 Nominating Committee, 1994-1995American Society for Bioethics and the HumanitiesStatus of the Field Committee (2000 -- 2003)Nominating Committee (2011 -- )American Society of Law, Medicine, and EthicsBoard of Directors 2006 – 2009Public Responsibility in Medicine and Research (PRIM&R)Core Conference Planning Committee 2007Honors2013 William Bartholome Award for Ethical Excellence, American Academy of Pediatrics: “The annual award recognizes an individual or group significantly impacting public discussion of ethical issues in pediatric medicine.”American Pediatric Society membership (appointed 1/1/2015)Fellow (Elected), The Hastings CenterMajor AppointmentsMember, IOM Consensus Committee on Ethical and Social Policy Aspects of Mitochondrial Replacement Therapy 2015 - Member, Standing Committee on Ethics, Canadian Institute of Health Research, July 2014 - Chair, DHHS Secretary’s Advisory Committee on Human Research Protections, October 2012 -- Chair, NIH Working Group for Human Embryonic Stem Cell Eligibility Review, September 2009 –Member, DHHS Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children, May 2010 -- Member, DHHS Secretary’s Advisory Committee on Human Research Protection, 2006 -- 2009Member, DHHS Secretary’s Advisory Committee on Human Research Protections Subcommittee on Harmonization 2009 -- 2010Member, DHHS Secretary’s Advisory Committee on Human Research Protection Subcommittee on Individuals with Impaired Decision-Making Capacity (SIIDR), 2007 -- 2009Member, DHHS Secretary’s Advisory Committee on Human Research Protection Subpart D Advisory Committee (addressing federal regulations for pediatric research) 2003 – 2006Member, FDA Ad Hoc Pediatric Ethics Advisory Committee (2005 - )Meeting Chair for 50.54 Review 12/9/08Meeting Chair for issue analysis 5/11/11Meeting Chair for issue analysis 9/9/13NIH Study Section Member, Human Genetics Study Section, ELSI subsection, 2006 – 2009Chair 2007 - 2009Other AppointmentsChair, Ad Hoc Study Section, NHGRI H3Africa program, July 2014Member, NHGRI Scientific Advisory Board, eMERGE Consortium, 2012-Member, NHGRI Sequencing Advisory Panel, Large Scale Genome Sequencing Program 2011 - 2014Member, Standards Working Group, California Institute for Regenerative Medicine, 2011 – Member, Event Monitoring Committee, The Legacy Girls Study (national observational study of girls in families with and without breast cancer) 2012 - Member, NHLBI Observational Monitoring Board for the Pediatric Cardiology Genomic Consortium, 2010 -- Panel Member, NIH State of the Science Conference, Family History and Improving Health, August 2009Member, NICHD/ACMG Ethics and Legal Working Group for the National Newborn Screening Translational Research Network, 2009 -- Member, Joint Advisory Group, GenoMel consortium (international consortium for melanoma research) 2006 -- Chair, Newborn Screening Advisory Committee, Utah Department of Health, 2006 - 2013NIH Ad Hoc Study Section Chair, NHGRI/ELSI Study Section, 2002, 2005NIH Ad Hoc Study Section member, NCCAM, 2004Co-Chair, NHGRI Project on Medical Sequencing, 2005 – 2007Member, Evaluation of Genomic Applications in Practice and Prevention Project (EGAPP), CDC, Atlanta GA, 2005 -- 2010Member, NIDDK Chronic Kidney Disease in Children Study External Advisory Committee, 2004 – Co-Chair, Ethics Working Group, NICHD/CDC/EPA National Children’s Study of Environmental Effects on Child Health and Development (2001 -- 2004)Utah Department of Health Chronic Disease Genetics Program, Advisory Board member, 2004 - Bioethics Advisory Committee, the International Genetics Consortium (2001 -- 2002) Multicenter non-profit organization to conduct genetic research on human tumor samplesMember, NHGRI/NIH IRB Guidebook advisory committee for genetic researchCore panel member, NIH funded project “Human research ethics and germ line engineering” Rebecca Dresser JD, PIMedical Advisory Board, Cord Blood Program, Intermountain Tissue Center, Salt Lake City (2002 -- )Advisory Board Member, ARUP Project on Expanded Newborn Screening, 2003 -2005Advisory Board Member, Stanford Project on the Genetics of Nicotine Addiction, 2003 – External Advisory Board. Center for Genetic Research Ethics and Law (CGREAL), Case Western Reserve University, 2004 -- Member, Ethics and Security Committee, The Marshfield Clinic Personalized Medicine ProgramMember, Reproductive Genetics Subpanel, National Conference of State Legislators Blue Ribbon Panel on Genetic Technology (2000 - 2001)Consultant, Children’s Hospital of Seattle, conflict of interest policy (2001)Study Section Member, NIH Ad Hoc Study Section on Ethics and Genetics, 12/96Member, Alpha-One Antitrypsin Deficiency Foundation Tissue Banking Advisory Committee (2000 -- )Ad Hoc Study Section Member, Neurofibromatosis Research Program, United States Army Medical Research and Materiel Command, 1/99Member, National Institutes of Health/American Academy of Pediatrics Newborn Screening Advisory Panel (1999 - 2000)Consultant: Presidential Advisory Committee for Human Radiation Experiments (1994 - 1995)Consultant: National Human Research Protection Advisory Committee (DHHS), Working Group on Third Parties (2001 - 2002 )Chair, Genetics Advisory Committee, Department of Health, State of Utah (1994 - 1998)Member, Genetics Advisory Committee, Department of Health, State of Utah (2002 - 2005)Member, Working Group on Prenatal Screening, Hastings Center, NY (1996 - 1998)Member, Working group, EASL International Consensus Conference on Hemochromatosis, Sponsored by CDC, NIH, WHO, Sorrento, Italy 5/99Working Group Member, "Recommendations for BRCA1 mutation carriers" NIH (NCI/NHGRI) Cancer Genetic Studies ConsortiumCo-leader, Informed consent working group, NIH (NCI/NHGRI) Cancer Genetic Studies ConsortiumGenetics Education Committee, Genetics in Primary Care Project, NIH/AHCPR (Norman Kahn, Project Director)Advisory Board: University of Iowa Center for Human Genome Research (1994 - 1996)Advisory Board: Science and Literacy Project, American Association for the Advancement of Science, Washington DCMember, Informed Consent Working Group, NIH Cancer Genetics Network (1999)Board member, ChildAid NPO (1999 - 2002)Board of Trustees, 2002 Utah Showdown Golf Tournament (University of Utah NICU is primary beneficiary)Co-Chair, Ethics Committee, NIH Cancer Genetics Network?Member, Health Care Advisory Committee, The March of Dimes, Utah Chapter (1996 - 1999)Advisory Committee member, Utah Birth Defects Registry, Utah Department of Health, (1999 -- )Membership in Professional SocietiesAmerican Academy of PediatricsAmerican Society of Law, Medicine and EthicsAmerican Society for Human GeneticsAmerican Society for Bioethics and HumanitiesAmbulatory Pediatric AssociationTeaching ExperienceFellowships Sponsored: GENESIS Program1995 - 1996: Pavel Tichtchenko, M.D.,Ph.D.1996 - 1997: Lenny Moss, Ph.D.1997 - 1998: Anna Chan, Ph.D.Graduate Student Dissertation CommitteesHeidi Hamman, MS, Department of PsychologyAndrea Salvador MS, Department of Family and Consumer AffairsShan He, PhD candidate, Department of Medical InformaticsAnn Johnson, PhD candidate, Department of Family MedicineCasey Rommel, PhD candidate, Department of Medical Informatics2006 – present Course Director: Ethical and Legal issues in Human Genetics (Human Genetics 6700)1994 -- present: Department of Internal Medicine, Medical Ethics Course for the School of Medicine, (course Co-Director 1997 - 1998, lecturer and small group leader for mandatory 4th year course for medical students). Course Director, 1998 - 2012.2001 – 2003 Seminar series “Ethical and policy issues in genetic research” for course “Genetics and Molecular Biology” J Kushner PI1997 - 2001: Small group leader, Social Medicine course, University of Utah School of Medicine first year course1997 -- present: Department of Pediatrics Resident Ethics Seminar series -- quarterly seminars1996 - 1997: Group leader, Human Genetics 610: Problem Based Learning, University of Utah School of Medicine1995 Invited Faculty, Ethical Issues in Human Genetics Workshop, University of Washington School of Medicine, Seattle, WA1992 -- present: Department of Internal Medicine Ethics Seminar Series -- monthly seminars1992 -- 1995 Ethics Journal Club, Eccles Institute of Human Genetics -- monthly series1990 - 1992 Elective “Ethical Issues in Primary Care” Case Western Reserve School of Medicine1989 - 1992 Faculty, Clinical Science Program and Fundamentals of Medical Decision Making, Case Western Reserve School of Medicine.1989 - 1992 Elective “Ethical Issues in Genetic Technology” Case Western Reserve School of Medicine1988 - 1992 Faculty, Homeostasis I Course, Case Western Reserve School of Medicine.1988 - 1991 Faculty, Primary care faculty seminar: “Teaching ethics in the primary care setting.” Case Western Reserve School of Medicine1988 - 1992 Ethics Case Conference Leader: Neonatal Intensive Care Unit; Comprehensive Care Unit; General Pediatrics Service; Burn Unit; General Internal Medicine; Cleveland Metropolitan General Hospital.1986 - 1988 Clinical Preceptor, Department of Pediatrics, Johns Hopkins School of Medicine, Francis Scott Key Medical Center, Baltimore, MD.1982 - 1986 Clinical Preceptor, Department of Pediatrics, University of Colorado.1981 - Supervisor, Georgetown University Medical TeamNong Khai Refugee Camp Nong Khai, Thailand.Clinical Teaching1992 - 2000: Supervise two/three pediatric residents in continuity clinics two days per week1992 - 2003: Attending service on general pediatric wards, 6 - 9 weeks per year1992 - 1996: School of medicine sophomore physical diagnosis course1998 – present, Pediatric clerkship case seminarsPublicationsRefereed JournalsSubmittedRothwell E, Maschke K, Botkin JR, Cuttler L, Goldenberg A, Kelleher K, Murray T. Biobanking research and human subjects protections: perspectives of IRB leaders at CTSA institutions. IRB. (submitted)Published88) Goldenberg A, Maschke KJ, Joffe S, Botkin JR, Rothwell E, Murray T, Anderson R, Deming N, Rostenthal B, Rivera S. IRB practices and policies regarding secondary research use of Biospecimens. BMC Medical Ethics (in print)87) 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)86) Rothwell E, Wong R, Rose NC, Anderson R, Fedor B, Stark LA, Botkin JR. A randomized controlled trial of an electronic informed consent process. Journal of Empirical Research on Human Research Ethics 2014;9(5):1-7.85) Rothwell E, Anderson RA, Swoboda KJ, Stark L, Botkin JR. Public attitudes regarding a pilot study of newborn screening for spinal muscular atrophy. Am J Med Genet A. 2013 Apr;161A(4):679-86. doi: 10.1002/ajmg.a.35756. Epub 2013 Feb 26.84) Forster D, Nelson DK, Borasky D, Botkin JR. The irregular terrain of the human subjects research regulations. Hastings Center Report 2014;45(4):S29-S30.83) Botkin JR, Rothwell E, Anderson RA, Goldenberg A, Kupperman M, Dolan SM, Rose NC, Stark L. What parents want to know about the storage and use of residual newborn bloodspots. Am J Med Genet A. 2014 Nov;164(11):2739-44.82) Bhimarao CN, Rothwell E, Hart K, Latimer S, Schiffman JD, Botkin JR. Attitudes of parents of children with serious health conditions regarding the use of residual newborn screening specimens for research. Public Health Genomics. 2014;17(3):141-8. doi: 10.1159/00036025181) Botkin JR, Rothwell E, Anderson R, Stark LA, Mitchell J. Attitudes regarding the use of electronic health information and residual clinical tissues for research. Journal of Community Genetics DOI 10.1007/s12687-013-0175-880) Botkin JR, Huckaby-Lewis M, Watson MS, Swoboda KJ, Anderson R, Bonhomme N, Brosco JP, Comeauy AM, Goldenberg A, Goldman E, Therrell B, Levy-Fisch, Tarini B, Wilfond B. Parental permission for pilot newborn screening research: Guidelines of the NBSTRN. Pediatrics 2014;133:e410-e417.79) Botkin JR, Anderson R, Murray T, Beskow LM, Maschke K, Cuttler L. Proposed regulations for research with Biospecimens: responses from stakeholders at CTSA consortium institutions. AJMG 2014 Apr;164A(4):892-7. doi: 10.1002/ajmg.a.36365.78) Burke W, Antommaria AH, Bennett R, Botkin J, Clayton EW, Henderson GE, Holm IA, Jarvik GP, Khoury MJ, Knoppers BM, Press NA, Ross LF, Rothstein MA, Saal H, Uhlmann WR, Wilfond B, Wolf SM, Zimmern R. Recommendations for returning genomic incidental findings? We need to talk! Genetics in Medicine 2013; August 2013. doi:10.1038/gim.2013.11377) Rothwell, E., Clark, L., Anderson, R., & Botkin, J.R. Residual Newborn Screening Samples for Research: Parental Information Decision Needs. Journal of Specialists in Pediatric Nursing 2013 18(2):115-22. doi: 10.1111/jspn.76) Botkin JR, Goldenberg A, Rothwell E, Anderson RA, Huckaby-Lewis M. Retention and research use of residual newborn screening bloodspots. Pediatrics 2013;131:120-127.75) Kemper AR, Kus CK, Otrander RJ, Comeau AM, Bouyle CA, Dougherty D, Mann MY, Botkin JR, Green NS. A framework for considering point-of-care newborn screening. Genetics in Medicine 2012;14:951-4. Doi: 10.1038/gim.2012.8974) Rothwell E, Anderson RA, Goldenberg A, Lewis MH, Stark L, Burbank M, Wong B, Botkin JR. Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study. Social Science & Medicine 2012; DOI: 10.1016/j.socscimed.2011.12.04773) Botkin JR. The value of evidence-based risk assessments. Clinical Trials 2011;8:685-686. 72) Botkin JR, Rothwell E, Anderson R, Stark L, Goldenberg A, Lewis M, Burbank M, Wong B. Public attitudes regarding the use of residual newborn screening specimens for research. Pediatrics 2012;129:231-238.71) Botkin JR. Newborn screening for Fragile X: Do we care what parents think? Pediatrics 2011;127:e1170.70) He S, Hurdle JF, Botkin JR, Narus S. Integrating a federated healthcare data query platform with electronic IRB information systems. AMIA Annu Symp Proc. 2010 Nov 13;2010:291-5.69) Lewis M, Goldenberg A, Anderson R, Rothwell E, Botkin J. State Laws Regarding the Retention and Use of Residual Newborn Screening Blood Samples. Pediatrics 2011;127:703-712.68) Kaltman JR, Thompson P, Lantos J, Berul CI, Cohen J, Cook N, Drezner J, Frick KD, Kannankeril PJ, Leslie L, Priori S, Saul JP, Sharpiro-Mendoza C, Siscovick D, Vetter VL, Botkin JR, Corrado C, Goldman S, Hlatky M, Boineau R, Burns K, Friedman R. Report of the NHLBI Working Group on Screening for Sudden Cardiac Death in the Young. Circulation 2011;123:1911-1918.67) Rothwell E, Anderson R, Burbank M, Goldenberg A, Lewis M, Stark L, Wong B, Botkin JR. Concerns of Newborn Screening Advisory Committee Members Regarding Storage and Use of Residual Newborn Screening Bloodspots. Amer J Pub Health 2011;101(11):2111-6.66) Botkin JR Evidence-based reviews of newborn screening opportunities. Pediatrics 2010;125(5):e1062.65) Ross LF, Loup A, Nelson R, Botkin J, Smith G, Kost R, MD, Gehlert S. Human subjects protections in community engaged research: a research ethics framework. Journal of Empirical Research on Human Research Ethics 2010;5(1):5 – 18.64) Ross LF, Loup A, Smith G, Kost R, Botkin J, Nelson R., MD, Gehlert S. Community-Academic Partnership throughout the Life-Cycle of a Research Project: Points to Consider. Journal of Empirical Research on Human Research Ethics 2010;5(1):19- 32.63) Ross LF, Loup A, Kost R, Botkin J, Nelson R., MD, Smith G, Gehlert S. Nine Key Functions for a Human Subjects Protection Program for Community Engaged Research: Points to Consider. Journal of Empirical Research on Human Research Ethics 2010;5(1):33 – 48.62) Botkin JR, Teutsch SM, Kaye CI, Hayes M, Haddow JE, Bradley LA, Szegda K, Dotson. Outcomes of interest in evidence-based evaluations of genetic tests. Genetics in Medicine 2010;12(4):228-235.61) Rothwell, E., Anderson, R., Botkin, J. Policy Issues and Stakeholder Concerns Regarding the Storage and Use of Residual Newborn Blood Samples for Research. Policy, Politics & Nursing Practice. 2010;11:5-1260) Botkin JR. Assessing the new criteria for newborn screening. Health Matrix: Journal of Law-Medicine. 2009;19(1):163-186.59) Goldenberg AJ, Hull SC, Botkin JR, Wilfond BS. The views of adults about he continued use of samples and data in pediatric biobanks once the children reach adulthood. J Peds 2009;155:578-83.58) Botkin JR, Anderson R, Staes C, Longo N. Developing a national registry for conditions identifiable through newborn screening. Genetics in Medicine 2009;11(3):176-182.57) Hull SC, Sharp R, Botkin JR, Brown M, Hughes M, Schwinn D, Sankar P, Sugarman J, Bolcic-Jankovic D, Clarridge B, Wilfond B. Patients’ views on identifiability of samples and informed consent for genetic research. American Journal of Bioethics 2008;20:3856) Moyer VA, Calonge N, Teutsch S, Botkin J. What is the role for evidence-based decision making in expanded newborn screening policy? The Hastings Center Report, 2008;38:23-31.55) Hamann HA, Smith TW, Smith KR, Croyle RT, Ruiz JM, Kircher JC, Botkin JR. Interpersonal responses among sibling dyads tested for BrCA1/BRCA2 gene mutations. Health Psychology 2008;27:100 -9.54) Schenkenberg T, Kochenour N, Botkin J. Ethical considerations in the care of the VIP. Journal of Bioethics 2007;18:56-63.53) McMahon W, Baty B, Botkin J. Genetic counseling and ethical issues for autism. Amer J Med Genet 2006;142:52-7.52) 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;117:1793-1799.51) Ellington L., Roter D, Dudley W, Baty B, Upchurch R, Larson S, Wylie J, Smith K, Botkin J. Communication analysis of BRCA1 genetic counseling. J Genetic Counseling 2005;14:377-86.50) 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 – 22.49) Botkin JR. Informed consent for genetic research. Current Protocols in Human Genetics 2005; John Wiley and Sons, 48) Botkin JR. Research for newborn screening: developing a national framework. Pediatrics 2005;116:862-871. Reprinted in:Ethics and Newborn Genetic Screening. Baily MA, Murray TH (eds) Johns Hopkins University Press, Baltimore, 2009:212-236.47) Munger MA, Stillman J, Botkin JR. The keystone of human research protections: the institutional review board. UH Review 2005;10(1):8 – 11.46) 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;14:377-8645) 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): 1-36.44) 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:424-431.43) 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):1-16.42) Smith KR, Ellington L, Chan AY, Croyle RT, Botkin JR. Fertility intentions following testing for a BRCA1 mutation. Cancer Epidemiol Biomarkers Prev 2004;13:733-40.41) Burke W, Acheson L, Botkin JR, Bridges K, et. al. Genetics in primary care: A USA Faculty Development Initiative. Community Genetics 2002;5:138-46.40) Botkin JR. Wrongful life and wrongful birth: ethical and legal issues in prenatal diagnosis. Florida State University Law Review 2003;30(2)265-293.39) 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:41-46.38) 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:201-209.37) Wylie JE, Skith KS, Botkin JR. Effects of spouses on distress experienced by BRCA1 mutation carriers over time. AJMG 2003;119C:35-44.36) Green MJ, Botkin JR. Predictive genetic testing in clinical practice: Is it different than other common tests? Annals of Internal Medicine 2003;138:571-5.35) Smith KR, Zick CD, Mayer RN, Botkin JR. Voluntary disclosure of BRCA1 mutation test results. Genetic Testing 2002;6(2):89-92.34) Botkin JR. Protecting the privacy of family members in survey and pedigree research JAMA 2001;285:207-211. (Reprinted in Emanuel et al (Eds) Ethical and Regulatory Aspects of Clinical Research 2003, Baltimore, Johns Hopkins Press.)33) 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)15-38.32) Zick CD, Smith KR, Mayer RN, Botkin JR. Genetic testing, adverse selection, and the demand for life insurance. AJMG 2000;93:29-39.31) 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;92:25-32.30) Harrison AM, Botkin JR. Can pediatricians define and apply the concept of brain death? Pediatrics , 1999; 103(6): e82, cgi/content/full/103/6/e82.29) Botkin JR. Ethical issues and practical problems in preimplantation genetic diagnosis. Am J Law, Med and Ethics 1998;26:17-28. (Reprinted in Steinbock B, Arras J (Eds) Ethical Issues in Contemporary Medicine )28) Smith KR, West J, Croyle R, Botkin JR. Familial context of genetic testing for cancer susceptibility: moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev. 1999 Apr;8(4 Pt 2):385-92.27) 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. [Note editorials devoted to this article: “Privacy matters”. Nature Genetics 1998;19:207-208. Byers PH, Ashkenas J. “Pedigrees – Publish? or Perish the Thought” AJHG 1998;63:678; “Publication of Pedigrees” Oncology Times 1998;20:19-20.]26) Baty B, Venne V, McDonald J, Croyle R, Smith K, Botkin J. Genetic counseling protocols for BRCA1 testing. J Genetic Counseling1997;6:223-244.25) Geller G, Botkin J, Green M, Press N, Biesecker B, et al. Genetic testing for susceptibility to adult-onset cancer: the process and content of informed consent. JAMA 1997;277:1467-1474.24) Burke W, Daly M, Garber J, Botkin J, et al: Recommendations for follow-up care of individuals with inherited predisposition to cancer: BRCA1 and BRCA2. JAMA 1997;277:997-1003.23) Burke W, Petersen G,Lynch P, Botkin J, Daly M et al: Recommendations for follow-up care of individuals with inherited predisposition to cancer : hereditary nonpolyposis colon cancer. JAMA1997;277:915-919.22) Croyle R, Smith K, Botkin J, Baty B, Nash J. Psychological responses to BRCA1 mutation testing: preliminary findings. Health Psychology 1997;16:63-72.21) Jacobson J, Kasworm E, Battin M, Francis L, Green D, Botkin J, Johnson S. Advance directives in Utah: information from death certificates and informants. Arch Int Med 1996;156:1862-1868.20) Botkin J, Croyle RT, Smith KR, Baty B, Lerman C, Goldgar D, Ward J, Flick B, Nash J. A model protocol for evaluating the behavioral and psychosocial effects of BRCA1 testing. JNCI 1996;88:872-882.19) Botkin J. Fetal privacy and confidentiality. Hastings Center Report 1995;25(5):32-40.18) Jacobson JA, Kasworm EM, Battin MP, Botkin JR, Francis LP, Green D. Decedent's reported preferences for physician assisted death: a survey of informants listed on death certificates in Utah. J Clinical Ethics1995;6(2):149-158.17) Mehlman M, Botkin J, Scarrow A. Coverage of genetic technology under national health reform. Am J Hum Genet 1994;55:1054-1060.16) Post S, Botkin J, Headrick L. Medical students in a time of HIV: Education and the duty to treat. Medical Education 1995;29:128-132.15) Post S, Botkin J. Adolescents and AIDS prevention: the pediatrician's role. Clinical Pediatrics 1995;34(1):41-45.14) Botkin JR, Mehlman MJ. Wrongful birth: medical, legal and philosophic issues. Am J Law, Med, & Ethics 1994;22:21-28.13) Leonhardt DE, Botkin JR, Shaddy RE. Equitable distribution in pediatric heart transplantation: arguments in favor of a national list. Arch Pediatr Adolesc Med (AJDC) 1994;148:316-320.12) Post S, Botkin JR. AIDS and the medical student: the risk of contagion and the duty to treat. JAMA ,1992;268:1189-1193.11) Botkin JR, Alemagno S. Carrier screening for cystic fibrosis: a pilot study of the attitudes of pregnant women. Amer J Pub Health 1992;82:723-25 10) Botkin JR, Post S. Confusion in the determination of death: distinguishing philosophy from physiology. Persp in Biol and Med 1992;36(1):129-138.9) Post S, Botkin JR, Whitehouse P. Selective abortion for familial Alzheimer disease. Obstet & Gynecol 1992;79(5 pt.1):794-8.8) Botkin JR. The seductive beauty of physiology. J Clin Ethics 1992;3:274-277.7) Botkin JR. Delivery Room decisions for tiny infants: an ethical analysis. J Clin Ethics 1991;1(4):306-11.6) Botkin JR. Prenatal screening: professional standards and the limits of parental choice. Obstet & Gynecol 1990;75:875-80.5) McCrary V, Botkin JR. Hospital policy on advance directives. JAMA 1989;262:2411-2414.4) Botkin JR. The legal concept of wrongful life. JAMA 1988;259:1541-1545.3) Botkin JR. Informed consent for lumbar puncture. AJDC 1989;143:899-904.2) Botkin JR. The anencephalic infant as organ donor. Pediatrics 1988;82:250-256.1) Botkin JR. The fire safe cigarette. JAMA 1988;160:226-229.Invited Articles19) Botkin JR. Balancing consumer advocacy and informed public policy. Kaiser Permanente Ethics Rounds 2006;16(2):3- 5.18) Botkin JR. Addressing the “petty tyranny” of IRBs. Amer J Med Genetics 2005;134(3):240-1.17) Botkin JR. What ethical challenges does embryo selection pose for children? AMA News Ethics Forum, Sept 6, 2004.16) Botkin J. Preventing exploitation in pediatric research. American Journal of Bioethics 2003;3(4):31-33. 15) Botkin J. Conflicts of interest in pediatrics. AAP Bioethics Section Newsletter, 200314) Botkin J Preimplantation genetic diagnosis and the biologic selection of children. The Permanente Journal 2001; 6 (4): 78-80. 13) Botkin J. Review of “Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures” by Dena Davis, Cambridge Healthcare Quarterly, 2002;11(1):102-105.12) Botkin J. Genetics in the New Millennium. The Park Record, Park City, Utah.11) Botkin J. Genetic counseling: Making room for beneficence. Journal of Clinical Ethics 1995;6:182-18410) Botkin JR. Ethics and evidence. J Clinical Ethics 1992;3(1):63-64.9) Botkin JR. Case studies in medical ethics. Clin Pediatr 1991;30(11):642.8) Botkin JR. Ethical issues in transfusions: informed consent and religious refusal. Spine: State of the Art Reviews 1991;5(1):7-15.7) Botkin JR. Review of “Before Their Time: Fetuses and Infants at Risk.” Disability Studies Quart. 1991.6) Botkin JR. Medical genetics: a cautionary tale. Medical Hum Rev 1990;4(2):27-31.5) Botkin JR. Ethical Issues in Human Genetic Technology. Pediatrician 1990;17:100-84) Botkin JR. Carrier screening for cystic fibrosis. Medical Ethics for the Physician. 1990;5(3):5,17.3) Botkin JR. DNR Orders for Children. Medical Ethics for the Physician 1989;4(2):11-12. Reprinted as Making Decisions about Resuscitation in Children. Medical Ethics for the Pediatrician 1991;6(3):1-2,10.2) Botkin JR. The case of Nancy Cruzan. Health Trustee Institute News. 1989;2(1):2.Botkin JR, Yesalis C. Preamble, Report of the National Consensus Meeting on Anabolic/Androgenic Steroids. U.S. Olympic Committee, 7/89.Books1) Access to the Genome: The Challenge to Equality Mehlman MJ, Botkin JR, Georgetown University Press, 1998.2) Genetics and Criminality: The Potential Misuse of Scientific Information in Court Botkin J, McMahon W, Francis L (eds). The American Psychological Association Press, 1999. Book Chapters19) Anderson R, Rothwell E, Botkin JR. Newborn Screening: Ethical, Legal and Social Implications. In Annual Review of Nursing Research, Pepper GA, Wysocki K, Eds) Volume 29 (in press).18) Botkin JR Preimplantation and prenatal genetic testing for inherited diseases, dispositions and traits. In Diekema DD, Mercurio MR, Adams MB (eds) Clinical Ethics in Pediatrics: A Case-Based Textbook. Cambridge University Press;2011:68-76.17) Botkin JR, Anderson RA, Rothwell E. Newborn Screening: Contemporary Challenges to the Parens Patriae Doctrine. Health Care and Social Justice:? Essays on the Distribution of Health Care. Rhodes and Battin (eds) Oxford University Press (in press)16) Botkin JR. Parental permission for research in newborn screening. In Ethics and Newborn Genetic Screening. Baily MA, Murray TH (eds) Johns Hopkins University Press, Baltimore, 2009:255-273.15) Jacobson JA, Battin, MP, Botkin JR, Francis L, Mason JO, Smith CB. Vertical transmission of infectious diseases and genetic disorder: are the medial and public responses consistent? In Ethics, Prevention, and Public Health, Dawson A, Verweij (Eds) Oxford University Press, New York 2007.14) 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.13) 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.12) 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, 2006.11) 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)10) 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 2000.9) Botkin JR, Wrongful life and wrongful birth actions In the Encyclopedia of Ethics, Legal, and Policy Issues in Biotechnology, John Wiley and Sons, 2000.8) 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: 288-307.7) 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: 57-70.6) 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: 41-56.5) Botkin J. Ethical and Legal Issues in Genetic Testing for Cancer Susceptibility, in Shaw G (ed) Cancer Genetics for the Clinician, New York, Kluwer Academic/Plenum Press 1999;189-202.4) Botkin JR. Ethical issues in male circumcision. The Encyclopedia of Bioethics (Reich W, ed) MacMillan Library Reference, 1995.3) Murray TH, Botkin JR. Ethical issues in genetic testing and screening. The Encyclopedia of Bioethics. (Reich W, ed) MacMillan Library Reference 19952) Botkin JR. Applying ethical principles to clinical decision making. in Kliegman R, Nieder ML, Super DM (Eds) Practical Stategies in Pediatric Diagnosis and Therapy, W.B. Saunders Co. 1996.1) Major contributor to "Chapter 7: Nontherapeutic research on children" in the Final Report of the Advisory Committee on Human Radiation Experiments U.S. Government Printing Office, October mittee Statements 1) “Female Genital Mutilation”, AAP Committee on Bioethics. Pediatrics 1998;102:153-156. 2) “Fetal Therapy –Ethical Considerations” AAP Committee on Bioethics Pediatrics 1999;103:1061-1063. 3) “Appropriate boundaries in the pediatrician-family-patient relationship” AAP Committee on Bioethics, Pediatrics 1999;104:334-336.4) “Sterilization of minors with developmental disabilities” AAP Committee on Bioethics, Pediatrics 1999;104:337-340.5) “Ethical Issues in Genetic Testing in Pediatrics” AAP Committee on Bioethics, Pediatrics 2001;107:1451-1455. 6) “The Disability Rights Critique of Prenatal Genetic Testing” Eric Parens, Adrienne Asch. Hastings Center Report 199929(5):s1-s22. Working group member7) “Do Not Resuscitate Orders in Schools” AAP Committee on Bioethics. Pediatrics 1998;105:878-879.8) “Palliative care for children” AAP Committee on Bioethics, Pediatrics 2000;106:351-357.9) Serving the Family From Birth to the Medical Home. Newborn Screening: A Blueprint for the Future ?A Call for a National Agenda on State Newborn Screening Programs Pediatrics 2000 106: 389-422. 10) “Forgoing life-sustaining medical treatment in abused children.” AAP Committee on Bioethics, Pediatrics 2000;106:1151-1153.11) “Institutional Ethics Committees” AAP Committee on Bioethics. Pediatrics 2001;107:205-209.12) “Human embryo research” AAP Committee on BioethicsPediatrics 2001;108:813-816.13) “Do-not-resuscitate orders for pediatric patients who require anesthesia and surgery.” AAP Committee on Bioethics, Pediatrics 2004;114:1686-1692. 14) “Responding to parental refusals of immunization of children” AAP Committee on Bioethics, Pediatrics 2005;115;1428-1431.15) Newborn Screening Expands: Recommendations for Pediatricians and Medical Homes Implications for the System. AAP Newborn Screening Authoring Committee. Pediatrics 2008;121:192-217.16) “Recommendations from the EGAPP Working Group: testing for cytochrome P450 polymorphisms in adults with nonpsychotic depression treated with selective serotonin reuptake inhibitors. Genet Med 2007;9(12):819-825.17) “The evaluation of genomic applications in practice and prevention (EGAPP) initiative: methods of the EGAPP Working Group” Teutsch SM, Bradley LA, Palomaki GE, et al. Genet Med 2008;10(10):18) Recommendations from the EGAPP Working Group: Can UGT1A1 genotyping reduce morbidity and mortality in patients with metastatic colorectal cancer treated with Irinotecan? Genetics in Medicine 2009;11(1):15-20.19) Recommendations from the EGAPP Working Group: Can tumor gene expression profiling improve outcomes in patients with breast cancer? Genetics in Medicine 2009;11(1):66- 73.20) Recommendations from the EGAPP Working Group: Genetic testing strategies in newly diagnosed individuals with colorectal cancer aimed at reducing morbidity and mortality from Lunch syndrome in relatives. Genetics in Medicine 2009;11(1):35-41.21) Forgoing Medically Provided Nutrition and Hydration in Children: Guidance for Ethical Decision Making. Diekema D, Botkin J, and the AAP Committee on Bioethics, AAP Clinical Reports, Pediatrics, 2009;124(2):813-22.22) NIH State of the Science statement, Family History and Advancing Health, 2009, ) Screening for Sudden Cardiac Death in the Young. NHLBI Working Group, 2010 at ) Recommendations of the EGAPP Working Group: Genomic profiling to assess cardiovascular risk to improve cardiovascular health. Genetics in Medicine 2010;12:839-843.25) The EGAPP Initiative: Lessons Learned. EGAPP Working Group; August 2013. doi:10.1038/gim.2013.113Photography PublicationsBotkin JR. “The Ethics of Nature Photography”: Currents Magazine, the North American Nature Photographers Association, Winter 2011Botkin JR. “Taking the whole picture”: Currents Magazine, the North American Nature Photographer’s Association, Winter 2012Letters1) Botkin JR. Christian Science and the care of children. [Letter] New Engl J Med 1984;310:1258.2) Botkin JR. Ethics and DNR orders. [Letter] New Engl J Med 1988;318:1757.3) Botkin JR. Care for the poor. [Letter] JAMA 1988;259:2237.4) Botkin JR. Whose genes are they and how can we identify them? [Letter] Science 1996;274:903-904.5) Battin MP, Botkin J, Francis LP, Jacobson J. Quick easy questions for analyzing medical ethical cases. [Letter] American Philosophical Association Newsletter 97:1, Fall 19976) Botkin JR, McMahon W, Smith K, Nash J. Permission and confidentiality in publishing pedigrees. (in response to letter from Schrock) JAMA 1998;280:1827.7) Botkin JR. Protecting the privacy of family members in research. JAMA 2001;285:1962-1963. (In response to letters to the editor regarding JAMA 2001;285:207-211.)8) Botkin JB, Clayton E, Nelson R. Wilfond B, Munger MA. Salmeterol and inhaled corticosteroids in patients with persistent asthma [letter]. JAMA 2001;286:3075 - 3076.9) Chesney RW, Botkin JR, Nelson RM. Embryo cell research (in response to letter about AAP policy statement) Pediatrics 2002 10) Ulmann W, Bennett R, Botkin J, et al, Planning the genome institutes future. Science 2003;299:1515.Abstracts1) Botkin JR, Alegmagno S. Carrier screening for cystic fibrosis: A pilot study of the attitudes of pregnant women. Pediatric Research 1991;29(No 4, part 2) 127A.2) Smith K, Chan A, Croyle R, Botkin J. Marital and fertility effects of genetic testing for cancer: Adult testing for a BRCA1 gene mutation. American Sociological Association Annual Meeting, San Francisco, 8/983) Baty B, Botkin J, Croyle R, Smith K, Nash J, McDonald J, Halls C, Flick B. BRCA1 counseling and presymptomatic testing: protocols and lessons from the first year. J Genetic Counseling 1995;4(4):318-319.4) Botkin JR, Croyle RT, Smith KR, Baty BJ, Nash JE, Flick BJ, Lerman CE. Psychosocial, behavioral and ethical issues in BRCA1 testing. Am Public Health Association, Annual Meeting Program 1995.5) Botkin JR, Croyle RT, Smith KR, Baty BJ, Nash JE, Flick BJ, Lerman CE. Behavioral and psychosocial responses to BRCA1 testing. Am J Human Genetics 1995;57(4) Suppl A292.6) Flick BJ, McMahon W, Botkin J, Smith K, Coon H, Baby B. Psychological impact of parental genetic testing on adolescents. American Psychiatric Association Research Colloquium, May 5, 1997, New York7) Harrison AM,Botkin JR. Ability of pediatric residents to define and apply the concept of brain death. Critical Care Medicine 1998;26(1S):A32.8) Botkin JR, Croyle R, Smith KR, Baty B, Nash J, Dutson D, McDonald J, Venne V, Chan A, Ward J, Lyon E, Lerman C, Goldgar D. Genetic testing for a BRCA1 mutation in a large kindred: psychological and behavioral outcomes at 4 to 6 months. Am J of Human Genetics, 1998;63(4):A12. (Platform presentation)9) K. Smith, J Botkin, R Croyle, H Hamann, A Chan, A. Stroup, J. Wylie, L Ellington. BRCA1 Mutation Testing and Changes in Psychological Distress: Who Is Most At Risk of Adverse Effects? ELSI: A Decade of Research Conference, NIH, Washington, DC, January 17, 200110) J Botkin, K Smith, R Croyle, ,B Baty, J Nash, D Dutson, A Chan, H Hamann, Caryn Lerman, J McDonald, Vi Venne, J Ward, D. Goldgar, E Lyon. Genetic Testing for a BRCA1 Mutation in a Large Kindred: Screening Behavior and Prophylactic Surgery in Women following Genetic Testing. ELSI: A Decade of Research Conference, NIH, Washington, DC, January 17, 200111) J Botkin, K Smith, W McMahon, J Wylie. Privacy and confidentiality in the publication of pedigrees. ELSI: A Decade of Research Conference, NIH, Washington, DC, January 17, 200112) Munger M, Botkin J, Alexander D, Gesteland R. “The ethical use of tissues in human subject research” Conference: Bioethical considerations in human subject research” Univ of South Florida13) Hamann, H.A., Smith, K.R., Botkin, J.R., Smith, T.W, Croyle, R.T. (2003, March). Interpersonal behavior among sibling dyads tested for BRCA1/2 gene mutations. The Society of Behavioral Medicine, Salt Lake City, UT.14) Hamann, H.A., Smith, K.R., Botkin, J.R., Smith, T.W, Croyle, R.T. Predictors of long-term psychosocial responses to BRCA1 genetic testing. Poster to be presented at the meeting of the Society of Behavioral Medicine, Salt Lake City, UT.15) Hamann, H.A., Smith, K.R., Botkin, J.R., Smith, T.W, Croyle, R.T. Psychological and physiological responses to genetic testing among BRCA1/2 sibling dyads. The American Psychosomatic Society, Phoenix, AZ.16) Holbrook R, Staes C, Mitchell J, Anderson R, Botkin J. (April 2007). Regionwide collaboration on newborn screening outcomes surveillance. ?Poster session presented at 2007 Utah Health Services Research Conference, Salt Lake City.17) Holbrook R, Staes C, Mitchell J, Anderson R, Botkin J. (May 23, 2007). Regionwide collaboration on newborn screening outcomes surveillance. ?Poster session presented at Spring American Medical Informatics Association Conference, Orlando. 18) Holbrook RA, Staes C, Longo N, Botkin J, Anderson R, Mitchell J. (November 2007). Development of Requirements and a Pilot Registry for Long-Term Follow-Up of Children with Heritable Conditions. ?Poster session presented at 2007 AMIA Fall Congress, Chicago. ??Selected Presentations (L) = Local presentation(R) = Regional presentation(N) = National presentation(I) = International presentation(I) Scheduled 6/7/15 “ASHG statement on genetic testing in children” European Society for Human Genetics, Glasgow, Scotland(N) 3/11/15 “Controversies in pediatric genetic testing” Pediatric Grand Rounds, Einstein/Montefiore Medical Center, Bronx, NY(N) 3/10/15 “Newborn screening: evolving issues for prenatal care providers” OB/GYN Grand Rounds, Einstein/Montefiore Medical Center, Bronx, NY(R) 3/5/15 “Newborn screening: evolving issues for prenatal care providers” OB/GYN Grand Rounds, University of Utah(N) 11/24/14 “Controversies in genetic testing in children” Berman Institute of Bioethics, Johns Hopkins University, Baltimore MD(N) 10/1/14 “Return of results from whole genome sequencing” NIH Bioethics Grand Rounds, Bethesda, MD(N) 8/4/14 “What causes research misconduct?” University of Washington, Seattle(N) 6/16/14 “Whole genome sequencing in newborn screening” National Academy of Sciences Workshop, Washington DC(N) 6/13/14 “Controversies in genetic testing and screening in children” Pediatric Grand Rounds, University of Kansas(N) 4/24/14 “Reporting results and incidental findings to research participants” AAHRPP National Convention, Salt Lake City, Utah(R) 4/10/14 “Exploring your genome: how much would you like to know?” Natural History Museum of Utah public lecture series, Salt Lake City, Utah(R) 4/4/14 “Ethics of research: Is participation in a clinical trial safe?” Legacy of Life event for Dr. Alan Morris, Intermountain Healthcare, Salt Lake City(N) 2/24/14 “Informed consent: opportunities and challenges for improvement” NCI/IOM Workshop on Informed Consent in Cancer Trials, Washington DC(N) 2/18/14 “IRB Perspectives on Return of Results” NIH/NHGRI Workshop on Return of Results, Washington DC(N) 2/10/14 “Genetic Exceptionalism” IOM Workshop on NHANES Return of Results, Washington DC(L) 1/8/14 “Newborn screening: Issues for prenatal care providers” Grand Rounds, Department of Ob/Gyn, University of Utah(L) 11/21/13 “Contemporary concepts in informed consent” Grand Rounds, Department of Internal Medicine, University of Utah(N) 11/9/13 “Can we change the federal research regulations?” Plenary Presentation. PRIM&R national meeting, Boston(N) 10/26/13 “Whole genome sequencing in newborn screening” Amer Soc Human Genetics National Meeting, Boston(N) 10/27/13 “The history and future of pediatric bioethics” AAP Bartholome Award Presentation, Orlando, FL(N) 9/11/13 “Ethical and regulatory issues in pharmacogenomics for pediatric mental health disorders.” NIMH conference, Washington DC(N) 4/25/13 “Whole genome sequencing in newborn screening” NHGRI, 10 year anniversary of the human genome, Bethesda, MD(N) 4/18/13 “Changes in ANPRM, HIPAA, and SACHRP relevant to biobanking” University of Minnesota(N) 4/2/13 “Newborn screening: Issues for prenatal care providers” UCSF Ob/Gyn Grand Rounds, San Francisco(N) 11/9/12 “Genetic Research: Is everyone vulnerable?” Cedar Sinai Medical Center IRB Grand Rounds, Los Angeles, CA(N) 7/11/12 “Managing Conflicts of Interest in Human Subject Protection Programs” PRIM&R webinar with Dr. Ross McKinney(N) 4/20/12 “Genetic research: Is everyone vulnerable?” AAHRPP National Conference, Denver, CO(L) 2/2/12 “Biobanking and the fate of residual newborn screening bloodspots” Department of Pediatrics Grand Rounds, University of Utah(L) 12/1/11 “Biobanks: who should control our bits and pieces?” Internal Medicine Grand Rounds, University of Utah(R) 10/12/11 “Ethical issues in lifespan research by developmental stage” University of Colorado CTSA Research Symposium, Denver CO(N) 6/6/11 “Ethical and regulatory issues in the storage of NBS specimens” American Public Health Laboratory Association national meeting, Omaha(N) 5/13/11 “Who controls our bits and pieces (and bytes and pixels)?” The Donovan Memorial Lecture, St. Agnes Hospital, Baltimore, MD(N) 5/12/11 “Public engagement regarding biobanking” National Center for Health Statistics subcommittee on Privacy and Confidentiality, Silver Springs, MD(N) 5/1/11 “Public attitudes regarding the retention and use of residual NBS bloodspots” Pediatric Academic Society Meeting, Denver, CO(R) 2/9/11 “The changing landscape of physician industry relationships” Urology Conference, Park City, Utah(N) “Public transparency in newborn screening” Newborn screening in the genomics era. NHGRI/NICHD invitational conference, Bethesda, MD(N) 10/22/10 “Embryonic stem cell policy and working group review” American Society of Bioethics and the Humanities National Meeting, San Diego(N) 9/12/10 “Genetic testing and public policy” American Society for Law, Medicine and Ethics Conference, Atlanta(R) 4/20/10 “Assent and dissent in pediatric research” ORI regional research integrity meeting, Denver CO(R) 1/16/10 “Research ethics” Chinese Society for Science and Technology, Salt Lake City(N) 11/14/09 “Ethical issues in research involving residual newborn screening samples” PRIM&R National Conference, Nashville(N) 10/17/09 “IRBs: Protecting subjects or protecting institutions?” AAP Annual Meeting, Baltimore(N) 10/17/09 “Direct to consumer genetic testing and the busy pediatrician” AAP Annual Meeting, Baltimore(N) 5/2/09 “Ethical Issues in Personalized Medicine” Pediatric Academic Societies meeting, Plenary Session, Baltimore, MD(N) 5/3/09 “Current Controversies in Newborn Screening” Pediatric Academic Societies meeting, Baltimore, MD(N) 5/5/09 “Consent issues in pediatric biobanking” Pediatric Academic Societies meeting, Baltimore, MD(N) 2/26/09 “Regulatory oversight of pediatric research” Secretary’s Advisory Committee on Heritable Diseases in Children, Washington, DC(N) 2/26/09 “Use of residual newborn screening samples for research” Secretary’s Advisory Committee on Heritable Diseases in Children, Washington, DC(N) 11/5/08 “The “Commensurate experience” criterion in 45CFR46.406. Lawson Wilkins Pediatric Endocrine Society conference, Bethesda, MD(L) 10/6/08 “Values in the practice of medicine” MSII Social Medicine course, University of Utah School of Medicine(L) 9/8/08 “Values in the practice of medicine” MSI Social Medicine course, University of Utah School of Medicine(N) 7/ 25/08 “Banking Biologic Samples for Pediatric Research” 2008 Seattle Children’s Hospital Bioethics Conference, Seattle WA(N) 5/1/08 “Genetic testing in adolescence” NIH Conference on the Ethical, Legal, and Social Implications of Genetics, Cleveland OH(N) 5/2/08 “What should be the criteria for newborn screening” Case Western Reserve University Law Medicine Symposium, Cleveland OH(N) 4/29/08 “Ethical and regulatory issues in pediatric research using newborns screening biobanks” State University of New York Pediatric Research Ethics Conference, Brooklyn, NY(N) 3/4/08 “Contemporary controversies in pediatric research ethics” Research ethics course, Cincinnati Children’s Hospital(N) 3/4/08 “the harm of existence: the legal and ethical concepts of wrongful life and wrongful birth” Grand Rounds, Cincinnati Children’s Hospital(R) 2/26/08 “Explaining options to parents: what does full disclosure mean?” Congenital Cardiovascular Disease Conference, Snowbird Utah(N) 1/31/08 Panel member for “Judging Genes: Implications of the Second Generation of Genetic Tests in the Courtroom” University of Maryland College of Law, NHGRI funded symposium for judges(N) 12/18 and 12/19/07 “Prospects for a population biobank through use of residual newborn screening samples” UCLA Medical Genetics Institute; “Is privacy a threat to genetic research?” Cedar Sinai Medical Center(N) 11/17/07 “Ethical and practical issues in genetic testing in pediatric cancer” Pediatric Oncology of Ontario Meeting, Toronto, CA(R) 9/15/07 Co-Organizer. Biologic Basis of Pediatric Practice Conference, Deer Valley, UT. Newborn screening issues for primary care providers(N) 6/7/07 “Is privacy a threat to genetic research?” New York Academy of Medicine conference, New York, NY(N) 6/2/07 Ethical and social issues raised by array CGH prenatal screening. Association of Genetic Technologists, Denver, CO(R) 5/18/07 Ethical issues in genetic testing. Ogden Medical and Surgical Society, Ogden, Utah(N) 5/7/07 Long term follow-up for newborn screening programs. Annual meeting of the American Public Health Laboratories Association, Minneapolis, MN(R) 5/4/07 Ethical, legal and social issues in genetic technology. Utah Valley State College Bioethics Seminar, UVSC(N) 3/1/07 “Ethical issues in growth attenuation of developmentally delayed children” Grand Rounds, Seattle Children’s Hospital(R) 12/10/06 “The Great Stem Cell Debate” Salt Lake City Forum for Questioning Minds, Salt Lake City Library(N) 12/6/06 “Tissue policy in academic institutions” Controversies in Research Ethics Seminar Series, the MacLean Center for Clinical Medical Ethics, University of Chicago(N) 12/4/06 “Newborn screening: proceed with caution.” Hot Topics in Neonatology, Annual Meeting. Washington DC(N) 11/18/06 “SACHRP recommendations on minimal risk research with children” PRIM&R Annual Meeting, Washington DC(N) 10/3/06 “Informed consent for genetic research” American Society of Clinical Oncology, Los Angeles(N) 7/27/06 “Ethical Issues in Genetic Testing and Screening” Jackson Lab annual genetics short course, sponsored by Johns Hopkins, Bar Harbor, Maine(R) 7/13/06 “Ethical issues in prenatal diagnosis using array-CGH” Mountain States Regional Genetics Consortium, Denver CO (L) 7/12/06 “Ethical issues in gene therapy” University of Utah DNA Learning Center, course for high school biology teachers(N) 6/5/06 “Ethical and social considerations in research with dried bloodspots” 4th International DNA Sampling Conference, Montreal, CA(N) 5/22/06 “Psychosocial concerns in genetic testing for color cancer susceptibility” American Gastroenterology Association National Conference, Los Angeles(N) 4/19/06 Predictive information in the genomic age. New Mexico Bar Association seminar, Albuquerque, NM(N) 4/5/06 Madearis Lectures, University of Pittsburgh (Grand Rounds, Department of Pediatrics, Lecture: Center for Health Law)(N) 2/3/06 “Newborn Screening: Toward an Ethically and Clinically Sound Program. President’s Council on Bioethics, Washington DC(N) 11/11/05 “Protecting human subjects in genetic research” Ethics and Genetics Symposium (EDGE), UCLA(L) 8/23/05 Panel discussion: Family law symposium. University of Utah College of Law(R) 7/15/05 “Ethical issues in expanded newborn screening” Mountain States Regional Genetics Network, Annual conference, Denver, CO(N) 5/12/05 “Ethical issues in research involving complete sequencing” Cold Spring Harbor Genome Science Conference(R) 4/30/05 “Special Legal and Ethical Considerations in Children with Life-Limiting Illnesses.” Palliative Care in Pediatrics Conference, Salt Lake City(N) 4/21/05 “Genetic Exceptionalism” NIH Physiological Genomics of Critical Illness and Injury Symposium, NIH(L) 4/8/05 Symposium in Honor of the Inauguration of President Young. “Genetics, Genomics, and Medicine: Future Road Map” University of Utah.(N) 1/5/05 Moderator and presenter for ethics discussion. Medical sequencing of individuals in existing cohort studies. NHGRI, Bethesda, MD(L) 12/16/04 Conflicts of interest in academic biomedical research. Grand Rounds, Department of Internal Medicine, University of Utah(N) 12/1/04 Ethical issues in genetic testing, Grand Rounds, Toronto Children’s Hospital, Toronto Canada(N) 10/30 04 Newborn screening technology, American Society of Bioethics and the Humanities national meeting, Philadelphia(N) 10/16/04 Course faculty on ethical, legal and regulatory issues in assisted reproductive technologies, American Society of Reproductive Medicine national meeting, Philadelphia(N) 10/9/04 Ethical issues in frozen embryos and stem cells. AAP National Conference and Exhibition, San Francisco, CA(N) 9/23/04 “Ethical and regulatory issues in research with children. Colorado state IRB conference, Denver, CO(N) 7/22/04 “Ethical issues in stored NBS specimens” National Conference of State Legislators, Salt Lake City, Utah(N) 5/6/04 “Ethical and regulatory issues in the use of stored NBS specimens for research” HRSA/CDC Newborn Screening Conference, Atlanta, GA(N) 2/25/04 “Ethical implications of halfway technology” Inaugural Conference for the Social and Behavior Research Branch of the National Human Genome Research Institute, NIH, Washington DC(L) 2/23/04 “Ethical issues in human genetics” Human Genetics Course, 1st year School of Medicine, University of Utah(N) 12/1/03 “Key ethical and policy issues in public health genetics” University of Washington, Seattle(N) 11/20/03 Panel member and summation presentation, CDC Consensus conference on newborn screening for CF. CDC Conference, Atlanta (N) 11/12/03 “Ethical issues in genetic research in renal disease” American Society of Nephrology, San Diego(N) 11/6/03 “Assent in pediatric research” Children’s Oncology Group, national meeting, Dallas, Tx(N) 11/1/03 “Ethical issues in newborn screening” American Academy of Pediatrics National Conference and Exposition, New Orleans(N) 10/25/03 “Germline genetic engineering: what is the justification?” American Society of Bioethics and the Humanities, National Meeting, Montreal(N) 9/18/03 “A national, collaborative research agenda for newborn screening” The Hasting Center, Fishkill, NY(N) 5/14/03 “Management of tissue resources in academic institutions” NIH Center for Bioethics, Fellows seminar series, Bethesda, MD(L) 4/7/03 “The Physician-Patient Relationship” Social Medicine, 1st year School of Medicine class, University of Utah(R ) 4/4/03 “Privacy and confidentiality in genetic research” National Society of Genetic Counselors regional meeting, Salt Lake City(N) 3/12/03 “Ethical and regulator issues in pediatric research” Society of Toxicology National Meeting, Salt Lake City(L) 1/14/03 “Human tissue resources for research: policy and procedures at academic institutions” Research in Progress, Department of Pediatrics, University of Utah(R ) 12/12/02 “Ethical and policy issues in stem cell research” Snow College Seminar series, Utah(N) 12/7/02 “Genetic revolution and criminal responsibility” International Society for the Reform of Criminal Law, Charleston NC(R) 12/3/02 “Ethical issues in the care of children with disabilities” South Davis Hospital, Bountiful, Utah(L) 11/25/02 “Informed consent” Social Medicine course, 1st year class, School of Medicine, University of Utah(R) 11/15/02 Ethical and policy issues in newborn screening. ULEND Seminar, Utah Department of Health(L) 11/7/02 “Ethical and regulatory issues in pediatric research” ARUP Laboratories, Salt Lake City, Utah(L) 11/6/02 “Conflicts of interest” Department of Surgery Grand Rounds, University of Utah(L) 10/24/02 “Stem cell technology: Ethical, legal, and policy issues” Surroptomist International, Salt Lake City(N) 10/16/02 “Ethical issues in research involving third parties” American Society of Human Genetics Workshop, Baltimore MD(N) 10/8/02 “Ethical, legal and social issues in genetic diagnosis” Genomics to Health workshop, National Human Genome Research Institute, NIH, Washington DC(R) 9/15/02 “Ethical and legal issues in stem cell research. Biologic Basis of Pediatric Practice, Deer Valley, Utah(N) 8/16/02: Workshop leader, Privacy issues in research, University of Washington, Seattle7/2/02 (N) Ethical and policy issues in newborn screening. Stanford University School of Medicine(N) 7/22/02 Meeting Co-Chair, NHGRI/ELSI External funding planning conference, Washington, DC(N) 6/14/02 Testimony to the US Senate Health, Education, Labor and Pensions (HELP) Subcommittee on Children and Families: the Federal Role in Newborn Screening (N) 5/15/02 “Ethical issues in genetic research with families” Bioethics Center, NIH(L) 4/22/02 “Informed consent” 1st year medical school, University of Utah, Social Medicine course(N) 4/16 – 4/18/02: Pfizer Visiting Professorship, University of Miami (11 presentations to faculty and students)(N) 4/7/01 “Ethical and policy issues in genetic testing for cancer susceptibility” American Association for Cancer Research, San Francisco(N) 3/1/01 “Disability law and tort implications for prenatal genetic testing” for “Genes and Disability: Defining Health and the Goals of Medicine” Florida State University College of Law, Tallahassee(N) 3/27/02 Radio interview. Preimplantation genetic diagnosis for early onset Alzheimer disease. National Public Radio, All Things Considered(L) 2/7/02 PCMC Bioethics Grand Rounds: Moderator for presentation of “White People”(N) 1/24/02 “Stem cells and cloning: basic biology and research methods” The Reproductive Technology Project, Washington, DC(L) 1/14/02” “Newborn screening” Noon pediatrics resident/student seminar, PCMC(L) 1/14/02: “Ethical issues in pediatrics” Undergraduate AMSA meeting, University of Utah(N) 12/17/01 “Protecting the privacy of family members in pedigree research” Dana-Farber Cancer Institute, Harvard Univ., Boston, MA(N) 12/5/01 “HIV testing and confidentiality in research with adolescents” Bioethics Grand Rounds, Bioethics Center, NIH, Bethesda(L) 11/30/01 “Ethical issues in pediatrics and genetics” ULEND seminar, Utah Department of Health. Salt Lake City(N) 12/4/01 “3rd party issues in research” NIDA Genetics Consortium, NIH, Bethesda(N) 11/5/01 “Mastering biology: Ethical implications for human welfare” Morris College address. Wisconsin(N) 10/27/01 “Emerging issues in genetic research with families” American Society of Bioethics and the Humanities National Meeting, Nashville, TN(N) 10/15/01 “Ethical and policy issues in tissue banking” International Society of Research Administrators, Vancouver, BC(L) 10/4/01 “Ethical and policy issues in stem cell research” SAGE group, Department of Human Genetics, University of Utah(N) 10/4/01 “Ethical issues in newborn screening” National Association of Neonatal Nurses, Salt Lake City, Utah(L) 10/3/01 “Stem cell research – Technical and Ethical Issues” Deseret Foundation Retired Physician Dinner, LDS Hospital, Salt Lake City(R) 10/26/01 “Stem Cells” Panel discussion, Women’s Legislative Council, Utah State Building, Salt Lake City(R) 8/16/01 “Ethical and legal issues in pharmacogenetics” Biologic Basis of Pediatric Practice, Deer Valley, Utah(N) 8/14/01 “Designing Better Babies: Reproduction in the Genomic Age” National Conference of State Legislators, San Antonio, TX(R) 7/28/01 “Ethical and legal issues in genetic testing for cancer susceptibility” Mountain States Genetics Network conference and webcast, Steamboat, CO(R) 6/22/01: “Stem Cells” KUER Radio West Interview(N) 5/4/01: “Parental autonomy versus fetal privacy” NIH/Johns Hopkins Genetic Counseling program, Bethesda, MD(N) 5/3/01: “Ethical Issues in Survey and Pedigree Research” National Human Genome Research Institute Seminar Series, Bethesda, MD(L) 4/30/01: Informed Consent, Social Medicine, 1st year medical school class, University of Utah(L) 4/11/01 “Ethical issues in gene therapy” The Ensign Club, Salt Lake City(N) 4/9/01: “Ethical issues in survey and pedigree research” DHHS Advisory Committee on Human Subject Protections, Washington DC(R) 3/20/01 “Genetics in primary care” Family Practice Refresher Course, Salt Lake City, UT(N) 3/8/01 : “Ethical Issues in Pedigree and Survey Research” Medical College of Virginia(R) 2/13/01 Ethical and legal issues in genetic testing for cancer susceptibility. Issues in Nursing Research Conference, Park City, Utah(L) 1/23/01 Federal oversight of academic research: protecting privacy of families in research. Huntsman Cancer Institute seminar series(N) 1/17/01 Behavioral responses to BRCA1 testing in a large kindred. “A Decade of ELSI Research” conference NIH, Bethesda(N) 1/16/01 Privacy and confidentiality in the publication of pedigrees. Plenary session, “A Decade of ELSI Research” conference NIH, Bethesda(L) 12/15/00 “Newborn Screening from Birth to the Medical Home” Grand Rounds, Department of Pediatrics, University of Utah(N) 11/28/00 “The Virginia Commonwealth University Case: Defining Human Subjects in Genetic Research” Case Western Reserve University Conversations in Bioethics series, Cleveland OH(N) 11/28/00 “Emerging ethical and legal issues in prenatal diagnosis” Elena and Miles Zaremski Law Medicine Forum, Case Western Reserve University School of Law, Cleveland OH(N) 11/28/00 “Ethical issues in the delivery room” Grand Rounds, Department of Pediatrics, Cleveland Clinic(R) 11/17/00 “Ethical and legal issues in genetic testing for cancer susceptibility” Sunrise Medical Center, Las Vegas, NV(N) 10/26/00 “Funding sources for research in biomedical ethics” Panel member, National Meeting of the American Society for Bioethics and the Humanities, Salt Lake City(N) 7/19/00 “Ethical and Legal Issues in Genetics” National Council of Juvenile and Family Court Judges, Snowbird, Utah(R) 7/12/00 KUER Radio Interview, Radio West Program, genetic technology(L) 6/27/00 “Ethical and legal issues in prenatal diagnosis” OB/Gyn Grand Rounds, University of Utah(N) 6/13/00 “Genetic engineering” Drug Information Association National Meeting, San Diego CA(N) 5/12/00 “Enhancement of reproduction through embryo manipulation and selection” Cold String Harbor Annual Genome Conference, Cold Spring Harbor, NY(L) 4/11/00 “Ethical and Legal Issues in Withholding and Withdrawing Life-Sustaining Treatment” Pain Grand Rounds, University of Utah(N) 4/7/00 Benefits Healthcare Foundation, 9th Annual Cancer Care Conference, “Clinical Implications of Genetic Testing” Great Falls, Montana(N) 3/23/00 Visiting Professor, University of Iowa. “Pediatricians’ perception of the impact of disabled children on families” and “Wrongful birth: professional standards in prenatal diagnosis.”(N) 3/9/00 “Genetics and informed consent: process and content at the millennium” Annual Clinical Genetics Meeting, American College of Medical Genetics, Palm Springs, CA.(N) 3/7/99: Stanford Center for Biomedical Ethics Seminar Series: “Ethical and Legal Issues in Prenatal Diagnosis”(N) 2/28/00: "Ethical and legal debates over the use of patient samples" Cambridge Healthtech Institute Conference, San Francisco(N) 2/10/00 “Informed consent for collecting tissue samples in household surveys.” NIA/National Research Council Workshop, Washington, DC.(N) 12/9/99 “Ethical issues in state genetics programs” MCHB sponsored meeting for state legislators, Orlando, FL(N) 11/15/99 “Use of health children in research” presentation to the FDA Subcommittee on Pediatric Research, Washington, DC (N) 10/30/99: “Line drawing in prenatal diagnosis” American Society for Bioethics and the Humanities, National Meeting, Philadelphia(R) 9/15/99 “Ethical issues in genetic testing” Annual Utah Judicial Conference, Park City, Utah(N) 7/28/99 “Ethical dilemmas in the care of disabled infants” SOFT National Meeting, Rochester, NY(N) 6/11/99 “Ethical, legal and Social issues in the Human Genome Project” Roping In the Human Genome Project Conference, San Antonio, Texas(N) 5/14/99 “Psychosocial issues in genetic testing for cancer susceptibility” National conference, American Society of Clinical Oncology, Atlanta, GA(N) 4/23/99 “Ethical Issues in the Conduct of Genetic Research” NHLBI symposium, San Diego(L) 4/20/99 “Cloning” Utah Medical Association, Medical Student Seminar Series(R) 1/30/99 “Ethical Issues in Genetic Testing” State of the Art Lecture, Western Society for Pediatric Research, Carmel, CA(R) 1/7/99 KPCW Interview “Access to the Genome: The Challenge to Equality”(R) 12/10/98 “Ethical and Policy Considerations in Human Cloning” Utah Humanist Society, Salt Lake City(R) 10/23/98: Panelist, Ethical Issues for “Genetics and the Courts Western Conference”, Snowbird, Utah(R) 10/16/98: Wrongful Lives and Wrongful Births, Grand Rounds, Sunrise Medical Center, Las Vegas, NV(L) 9/22/98 Speaker and panelist, “Genetics, Medicine, Biology, & Bioethics” President’s Installation, University Connections Panel, University of Utah(L) 9/16/98: “Genetic testing for cancer susceptibility” Family and Preventive Medicine Grand Rounds, University of Utah(R) 7/24/98 (broadcast): “Ethics and Human Genetics” Civic Dialogue program, KUED Television, Salt Lake City(N) 7/24/98: Ethical issues in the long-term care of children with profound developmental disability. Support Organization for Trisomy and Related Syndromes (SOFT). Pittsburgh, PA(N) 7/2/98 “Informed consent in cancer genetics research,” with Gail Geller ScD, Cancer Genetics Studies Consortium and the Cancer Genetics Network meeting, NIH, Bethesda.(N) 6/18/9: “Privacy and Confidentiality in Pedigree Publication” National Bioethics Retreat, Cape Cod, MA(N) 6/11/98: “The Transparent Womb: Prenatal Diagnosis and the Responsible Use of Technology”, National Human Genome Research Institute seminar, NIH, Bethesda MD(L) 6/8/98: Discussion leader, “Informed Consent in the Storage of Tissue Samples” Huntsman Cancer Institute, University of Utah(N) 5/15/98: Genetic research panel discussion, “Science Friday” -- a National Public Radio broadcast, with Stephen Prescott, Ray Gesteland, Mark Leppert. Mario Cappechi(N) 5/3/98: Council of Biology Editors, National Meeting, “Privacy and Confidentiality in the Publication of Pedigrees” with Mark Skolnick,Ph.D., Richared Koehn, Ph.D., and Steven Jacobsen, Ph.D.,Salt Lake City(L) 4/23/98 University of Utah Continuum Conversation “Diving into the Gene Pool: Questions and Answers about Code, Counseling and Consequences” with Saundra Buys, M.D., and Vickie Venne, M.S.(L) 4/14/98 Utah Medical Association, University of Utah medical student seminar series: “Ethical and Legal Issues in Genetics”(R) 3/28/98 “Ethical, Legal and Social Issues in DNA Polymorphisms” in Cold Spring Harbor DNA Learning Center workshop for high school science teachers (David Miklos, PI), University of Utah(N) 3/6/98: “Ethical and Legal Issues in Genetic Testing for Cancer Susceptibility” Cancer Genetics for the Clinician Conference, University of South Florida, Clearwater FL(N) 2/14/98 “Can you keep a secret? Concerns with Pedigree Publication” AAAS Annual Meeting and Science Exposition, Philadelphia, PA(R) 12/19/97 Utah Career College “Ethical issues in genetics”(L) 12/4/97: School of Nursing, Clinical Genetics course, “Ethical and legal issues in medical genetics.”(L) 12/2/97 PCMC Ethics Grand Rounds “Understanding quality of life” with P.Peterson, M Witte, S Hattenward, F Tait. (L) 10/20/97: Division of Neonatology, Department of Pediatrics, University of Utah seminar: “How small is too small?”(L) 10/18/97: Department of Human Genetics Retreat: “Behavioral and Psychosocial Effects of BRCA1 testing”(L) 10/16/97: Social Medicine course, University of Utah School of Medicine “The physician patient relationship”(L) 10/7/97: Dept of Pediatrics Research Seminar “Genetic testing for cancer susceptibility” University of Utah(N) 9/16/97: “Flow of information from research to the family” Invited workshop participant and presenter. NHGRI and NAPBC Workshop on Privacy and Confidentiality in Genetic Research. Bethesda, MD(L) 9/15/97: “Introduction to Medical Ethics” Introduction to Medicine Course, Univ of Utah School of Medicine(N) 8/1/97: “Ethical Issues in the Care of Infants with Semi-Lethal Syndromes” National SOFT Conference, Salt Lake City, UT(N) 6/26/97: “Preventing Wrongful Lives and Wrongful Births”: University of Virginia Center for Biomedical Ethics, Charlottesville, VA(N) 6/20/97: “Ethical analysis of pre-implantation genetic diagnosis” National Advisory Board on Ethics and Reproduction, Washington, DC(L) 6/17/97: PCMC Hospital Wide Grand Rounds: “Medical Ethics and Religious Beliefs”(N) 5/12 - 5/14/97: University of Arizona and Pima County Medical Society lectures on ethical issues in neonatology, Phoenix and Tucson, AZ(N) 4/10/97 “Ethical and psychosocial issues in genetic testing for cancer susceptibility” Western Reserve Health Care Cancer Symposium, Youngstown, OH(N) 3/23/97 “Ethical, legal and social issues in genetic testing for BRCA1/BRCA2 mutations” Society for Gynecologic Oncology, Phoenix, AZ(N) 2/13/97 “The line drawing problem” Working Group on Prenatal Diagnosis, The Hastings Center, Briarcliff Manor, NY(L) 1/28/97 “Classic cases in pediatric ethics” Utah Medical Association medical student lecture series, University of Utah(R) 10/5/96 “Ethical issues in care of infants with lethal malformations” and “Genetic testing for inherited cancer susceptibility” Mountain States Regional Genetic Services Network, Cytogenetics and molecular workshop, Park City(R) 9/21/96 “ Wrongful life and wrongful birth” Utah State Birth Defects Registry Annual Conference, Snowbird, UT(R) 9/11/96 “The criminal gene controversy: The status of science and the law.” with Creighton Horton J.D., Utah State Annual Judicial Conference, Park City, UT(N) 6/22/96 “The ELSI Model: Should it be Adopted by Other NIH Centers?” Bioethics Retreat, Copper Mountain, CO(L) 5/21/96 “Ethical Issues in Genetic Technology” Utah Medical Association medical student lecture series, University of Utah(N) 5/13 and 5/14/96: Chidwick Lectures, Genetic Engineering and Gene Therapy, Good Samaritan Hospital, Portland OR(R) 5/4/96 "Providing risk information" Organization of Teratology Information Services (OTIS) Conference, Salt Lake City(R) 4/27/96 "Ethical issus in genetic testing for BRCA1" Life After Breast Cancer Conference, Salt Lake City(N) 4/26/96 Invited participant: "Workshop on Inherited Breast Cancer in Jewish Women -- Ethical, Legal and Social Implications" Joint Program on Genetics, Ethics and the Law, Case Western Reserve Univ, Cleveland(L) 3/22/96 "Ethical Issues in Genetics" Science seminar, North Sevier High School, Utah(L) 3/7/96 "Defining and Determining Brain Death" with Don Vernon, M.D., Grand Rounds, Department of Pediatrics, Univ. of Utah(R) 1/21/96 " Genetics and health reform in Utah" Mountain States Genetics Network, Finance Committee, Phoenix, AZ(L) 12/12/95 "Ethical issues in gene therapy" Department of Human Genetics, University of Utah(R) 11/28/95 "Human genetics: promises and pitfalls" Utah Valley State College, Orem, Utah(L) 11/15/95 "Behavioral and psychosocial effects of BRCA1 testing" Huntsman Institute Seminar, University of Utah(N) 11/4/95: "Ethical Issues in Genetic Testing for Polycystic Kidney Disease" National Kidney Foundation Annual Meeting, San Diego(N) 10/25/95: "Behavioral and Psychosocial Effects of BRCA1 Testing" Poster session and Poster Seminar, ASHG Annual Meeting, Minneapolis(N) 10/31/95 : "Ethical Issues in BRCA1 Testing" American Public Health Association Annual Meeting, San Diego(R) 9/21/95 "Junk Science: Scientific Evidence in the Courtroom" with Susan Poulter, JD,PhD, Annual Utah State Judicial Conference, Midway, UT(N) 6/14/95 "Genetic Privacy" and sessions as invited faculty, Ethical Issues in Human Genetics Workshop, University of Washington School of Medicine, Seattle, WA(N) 5/18/95 Participant, Round table discussion of insurance issues in genetic testing, American Academy of Actuaries, Washington, DC(R) 4/6/95 "Ethical and psychological issues in BRCA1 testing" Life After Breast Cancer Conference, Salt Lake City(R) 3/21/95 "Ethics Committees" Brigham City Hospital Ethics Committee(N) 1/25/95 "Behavioral and psychosocial responses to BRCA1 testing" Hematology/Oncology Grand Rounds, University of Iowa School of Medicine(N) 2/17/95 "Radiation research with children" presentation to the President's Advisory Committee on Human Radiation Experiments, Washington, DC(R) 2/8/95 Panel member, "Ethical issues in transplantation" United Network for Organ Sharing, Region 5 Meeting, Salt Lake City(N) 1/25/95 "University of Utah ELSI Research" University of Iowa Genome Center ELSI Core seminar(N) 1/26/95 "Recommendations for BRCA1 carriers" NIH research group for genetic predisposition to breast, ovarian and colon cancer.10/20/94 "Wrongful Life and Wrongful Birth" Belarussian Academy of Genetics and Obstetrics and Gynecology, Minsk, Belarus(N) 8/4/94 Ethical Issues in medical care of children with trisomy syndromes." National meeting of S.O.F.T (Support Organization for Trisomy Syndromes and Related Disorders) Toronto, Canada(N) 7/7/94 NIH Workshop Participant "Informed consent for genetic testing of stored tissue samples." National Center for Human Genome Research, Office for Protection of Research Risks, Bethesda MD(N) 6/28/94 "The 23 week/500 gram position in support of extremely low birth weight infants." Bioethics Retreat, Bar Harbor, Maine(R) 3/18/94 "Ethical Issues at the Frontier of Medicine" Brigham Young University symposium "Ethical Issues in Modern Biology and Agriculture"(N) 3/14/94 "Ethical Issues in Gene Therapy" Graduate Student Course on Gene Therapy, University of Michigan Center for Human Genome Research(N) 10/22/93"Surrogate Decision Makers" and "What we do and do not know about the ethics of life-sustaining care" Florida Hospital Association Conference on Ethics Committees, Orlando Fla.(N) 10/21/93"Problems with Established Ethics Committees' Florida Hospital Association Conference on Ethics Committees, Orlando Fla(R) 9/8/93"Ethical Issues in Pediatrics" and "Ethical Issues in Genome Research" Billings Annual Ethics Conference, Billings Mont(L) 7/19/93"DNR Orders" Department of Pediatrics resident conference University of Utah(R) 7/15/93 "Malpractice issues in general pediatrics" Federal Attorneys National Torts Conference, Salt Lake City(R) 6/9/93 "Ethics, Eugenics and the Human Genome" Utah State Conference on Ethics and Genetics, University of Utah(R) 6/9/93"Ethical and Legal Issues in the Nursery" Intermountain Pediatric Society Annual Meeting, Salt Lake City(L) 5/20/93"Ethical Issues in Human Genetics" Pediatric Grand Rounds, University of Utah(N) 9/24/92 "Wrongful Birth and Wrongful Life" Grand Rounds, Children’s Hospital of Pittsburgh ................
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