JEFFREY ROBERT BOTKIN
Affiliation: University of Utah
- Retention and research use of residual newborn screening bloodspotsJeffrey R Botkin
University of Utah, Salt Lake City, Utah 84112, USA
Pediatrics 131:120-7. 2013..This article represents the work of the authors and does not represent American Academy of Pediatrics policy...
- Public attitudes regarding the use of residual newborn screening specimens for researchJeffrey R Botkin
University of Utah, Salt Lake City, UT 84112, USA
Pediatrics 129:231-8. 2012..Our objective was to evaluate public opinion about the policies and practices relevant to the retention and use of residual bloodspots for biomedical research...
- Outcomes of interest in evidence-based evaluations of genetic testsJeffrey R Botkin
University of Utah, Salt Lake City, Utah, USA
Genet Med 12:228-35. 2010..The framework used by the Evaluation of Genomic Applications in Practice and Prevention Working Group in considering, categorizing, and weighting health-related outcomes as applied to genomic technologies is presented here...
- Developing a National Registry for conditions identifiable through newborn screeningJeffrey R Botkin
Department of Pediatrics, Division of Medical Ethics, University of Utah, 2000 East 75 South 108, Salt Lake City, UT 84112, USA
Genet Med 11:176-82. 2009..This article provides an overview of the justification for such a system and recommendations for a design...
- Newborn screening technology: proceed with cautionJeffrey R Botkin
Department of Pediatrics and Medical Ethics, University of Utah, Salt Lake City, Utah, USA
Pediatrics 117:1793-9. 2006
- Research for newborn screening: developing a national frameworkJeffrey R Botkin
Department of Pediatrics and Medical Ethics, University of Utah, Salt Lake City, UT 84112 8930, USA
Pediatrics 116:862-71. 2005..Such a framework for research will require collaboration between states and the federal government, a collaboration that is emerging through recent federal legislation and funding...
- Addressing the "petty tyranny" of IRBsJeffrey R Botkin
Department of Pediatrics, University of Utah, Salt Lake City, Utah, USA
Am J Med Genet A 134:240-1. 2005
- Ethical considerations in clinical care of the "VIP"Thomas Schenkenberg
Department of Neurology, University of Utah School of Medicine, Salt Lake City, USA
J Clin Ethics 18:56-63. 2007
- Communication analysis of BRCA1 genetic counselingLee Ellington
University of Utah College of Nursing, 10 S 2000 E, Salt Lake City, UT 84112 5880, USA
J Genet Couns 14:377-86. 2005..We found that participant gender, presence of a client companion, and counselor identity influence session communication...
- Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testingJeffrey R Botkin
Department of Pediatrics, University of Utah, Salt Lake City, Utah 84113, USA
Am J Med Genet A 118:201-9. 2003..Oophorectomy was obtained by a large proportion of carrier women in contrast to mastectomy which was not utilized within the first 2 years following testing...
- Effects of spouses on distress experienced by BRCA1 mutation carriers over timeJean E Wylie
Resource for Genetic and Epidemiologic Research, School of Medicine, University of Utah, Salt Lake City, 84132, USA
Am J Med Genet C Semin Med Genet 119:35-44. 2003..These findings are an important addition to the literature and will augment clinicians' ability to identify individuals potentially at risk for negative responses to adverse genetic test results...
- Fertility intentions following testing for a BRCA1 gene mutationKen R Smith
University of Utah, Salt Lake City, UT, USA
Cancer Epidemiol Biomarkers Prev 13:733-40. 2004..To test whether fertility intentions differed among persons who tested positive, tested negative, or did not know their genetic status for a mutation of the BRCA1 gene...
- Are there characteristics of infectious diseases that raise special ethical issues?Charles B Smith
Division of Medical Ethics, University of Utah, Salt Lake City, Utah 84112 USA
Dev World Bioeth 4:1-16. 2004....
- Professional opportunities and responsibilities in the provision of genetic information to children relinquished for adoptionVickie L Venne
Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah 84112, USA
Am J Med Genet A 119:41-6. 2003..This article briefly describes the experience and discusses the unique issues that arise in counseling a parent who has relinquished a child who is subsequently at risk to inherit a mutation for an adult onset genetic condition...
- The challenges of collaboration for academic and community partners in a research partnership: points to considerLainie Friedman Ross
Department of Pediatrics, University of Chicago, IL 60637, USA
J Empir Res Hum Res Ethics 5:19-31. 2010..This document is structured to provide a "points- to-consider" roadmap for academic and community research partners to establish and maintain a research partnership at each stage of the research process...
- Human subjects protections in community-engaged research: a research ethics frameworkLainie Friedman Ross
Department of Pediatrics, University of Chicago, IL 60637, USA
J Empir Res Hum Res Ethics 5:5-17. 2010..This new framework for exploring the risks in community-engaged research can help academic researchers and community partners ensure the mutual respect that community-engaged research requires...
- Prenatal diagnosis and the selection of childrenJeffrey R Botkin
Division of Human Genetics, University of Utah, USA
Fla State Univ Law Rev 30:265-93. 2003
- Interpersonal responses among sibling dyads tested for BRCA1/BRCA2 gene mutationsHeidi A Hamann
Department of Psychology, Washington State University, Pullman 99164 4820, USA
Health Psychol 27:100-9. 2008..The purpose of this study was to compare sibling pairs with different combinations of BRCA1/BRCA2 test results on measures of affect, interpersonal responses, and physiological reactions...
- Ethical issues in identifying and recruiting participants for familial genetic researchLaura M Beskow
Department of Health Policy and Administration, University of North Carolina at Chapel Hill School of Public Health, Chapel Hill, NC 27599 7411, USA
Am J Med Genet A 130:424-31. 2004..They suggest a framework for considering alternative recruitment strategies and their implications, as well as highlight areas in need of further empirical research...
- "Genetic exceptionalism" in medicine: clarifying the differences between genetic and nongenetic testsMichael J Green
Penn State Milton S Hershey Medical Center, Hershey, Pennylvania, USA
Ann Intern Med 138:571-5. 2003....
- Expanding newborn screening: process, policy, and prioritiesVirginia A Moyer
Baylor College of Medicine and Texas Children s Hospital, USA
Hastings Cent Rep 38:32-9. 2008..By the standards used to decide whether to introduce new preventive health services into clinical use, the decision-making in newborn screening policy has been lax...
- Preventing exploitation in pediatric researchJeffrey R Botkin
University of Utah
Am J Bioeth 3:31-2. 2003
- Newborn screening for cystic fibrosis: evaluation of benefits and risks and recommendations for state newborn screening programsScott D Grosse
Office of the Director, National Center on Birth Defects and Developmental Disabilities, CDC, Atlanta, Georgia 30333, USA
MMWR Recomm Rep 53:1-36. 2004..States should consider the magnitude of benefits and costs and the need to minimize risks through careful planning and implementation, including ongoing collection and evaluation of outcome data...
- Methods for Promoting Public Dialogue on the Use of Residual Newborn Screening SaJEFFREY ROBERT BOTKIN; Fiscal Year: 2010..The project also will compare 3 methods of obtaining public input on this important set of issues. The project is directly relevant to policies in public health departments that affect virtually every newborn in the country. ..