JEFFREY ROBERT BOTKIN
Affiliation: University of Utah
- 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
- 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...
- 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...