. 2015 Fall;43(3):529-37.

doi: 10.1111/jlme.12295.

Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject

Sarah Scollon¹, Katie Bergstrom², Laurence B McCullough³, Amy L McGuire⁴, Stephanie Gutierrez⁵, Robin Kerstein⁶, D Williams Parsons⁷, Sharon E Plon⁸

Affiliations

¹ Board-certified genetic counselor at Baylor College of Medicine. She received her M.S. in Genetic Counseling from University of Michigan, Ann Arbor, MI.
² Board certified genetic counselor at Baylor College of Medicine. She received her M.S. in Genetic Counseling from the University of Utah in Salt Lake City, UT.
³ Professor of Medicine and Medical Ethics and the Associate Director for Education and holder of the Dalton Tomlin Chair in Medical Ethics and Health Policy in the Center for Medical Ethics and Health Policy, Baylor College of Medicine. He received his Ph.D. from University of Texas, Austin, TX.
⁴ Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy and a member of the Human Genome Sequencing Center at Baylor College of Medicine. She received her J.D. from the University of Houston, Houston, TX and her Ph.D. from the Institute for Medical Humanities at University of Texas Medical Branch.
⁵ Project manager at Baylor College of Medicine. She received her B.S. from Texas State University in San Marcos, TX.
⁶ Project coordinator for the Baylor College of Medicine Advancing Sequencing in Childhood Cancer Care (BASIC3) study at Baylor College of Medicine. She received her M.T. from Baylor University, Waco, TX. She holds ASCP and CCRA certifications.
⁷ Board-certified pediatric hematologist-oncologist who studies the clinical application of genomic technologies in pediatric cancer care. He is the Director of the Center for Personal Cancer Genomics and Therapeutics and the Co-Director of the Cancer Genetics & Genomics Program at Texas Children's Cancer and Hematology Centers, Baylor College of Medicine. He received his M.D. and Ph.D. from Ohio State University College of Medicine, Columbus, OH.
⁸ Board-certified medical geneticist who focuses on laboratory and clinical research related to cancer susceptibility. She is a Professor in the departments of Pediatrics and Molecular and Human Genetics at Baylor College of Medicine. She is the Director of the Cancer Genetics and Genomics Program at Texas Children's Cancer and Hematology Centers. She received her M.D. and Ph.D. from Harvard University, Boston, MA.

PMID: 26479562
PMCID: PMC4617204
DOI: 10.1111/jlme.12295

Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject

Sarah Scollon et al. J Law Med Ethics. 2015 Fall.

. 2015 Fall;43(3):529-37.

doi: 10.1111/jlme.12295.

Authors

Sarah Scollon¹, Katie Bergstrom², Laurence B McCullough³, Amy L McGuire⁴, Stephanie Gutierrez⁵, Robin Kerstein⁶, D Williams Parsons⁷, Sharon E Plon⁸

Affiliations

¹ Board-certified genetic counselor at Baylor College of Medicine. She received her M.S. in Genetic Counseling from University of Michigan, Ann Arbor, MI.
² Board certified genetic counselor at Baylor College of Medicine. She received her M.S. in Genetic Counseling from the University of Utah in Salt Lake City, UT.
³ Professor of Medicine and Medical Ethics and the Associate Director for Education and holder of the Dalton Tomlin Chair in Medical Ethics and Health Policy in the Center for Medical Ethics and Health Policy, Baylor College of Medicine. He received his Ph.D. from University of Texas, Austin, TX.
⁴ Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy and a member of the Human Genome Sequencing Center at Baylor College of Medicine. She received her J.D. from the University of Houston, Houston, TX and her Ph.D. from the Institute for Medical Humanities at University of Texas Medical Branch.
⁵ Project manager at Baylor College of Medicine. She received her B.S. from Texas State University in San Marcos, TX.
⁶ Project coordinator for the Baylor College of Medicine Advancing Sequencing in Childhood Cancer Care (BASIC3) study at Baylor College of Medicine. She received her M.T. from Baylor University, Waco, TX. She holds ASCP and CCRA certifications.
⁷ Board-certified pediatric hematologist-oncologist who studies the clinical application of genomic technologies in pediatric cancer care. He is the Director of the Center for Personal Cancer Genomics and Therapeutics and the Co-Director of the Cancer Genetics & Genomics Program at Texas Children's Cancer and Hematology Centers, Baylor College of Medicine. He received his M.D. and Ph.D. from Ohio State University College of Medicine, Columbus, OH.
⁸ Board-certified medical geneticist who focuses on laboratory and clinical research related to cancer susceptibility. She is a Professor in the departments of Pediatrics and Molecular and Human Genetics at Baylor College of Medicine. She is the Director of the Cancer Genetics and Genomics Program at Texas Children's Cancer and Hematology Centers. She received her M.D. and Ph.D. from Harvard University, Boston, MA.

PMID: 26479562
PMCID: PMC4617204
DOI: 10.1111/jlme.12295

Abstract

The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settings.

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References

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Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject

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Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject

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