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Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
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Appendix B

List of Registrants

Jacob Adetunji

U.S. Agency for International Development

Aimee Alexander

Centers for Disease Control and Prevention

Laura Amendola

University of Washington

Yutaka Aoki

National Center for Health Statistics

John Aquino

Bloomberg BNA

Christine Benally

Indian Health Service

Adam Berger

Institute of Medicine

Benjamin Berkman

National Human Genome Research Institute

Lew Berman

ICF International

Laura Beskow

Duke University

Barbara Biesecker

National Human Genome Research Institute

Leslie G. Biesecker (Steering Committee)

National Human Genome Research Institute

Marianna Bledsoe

George Washington University School of Medicine and Health Sciences

Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×

Stephen Blumberg

National Center for Health Statistics

Jeffrey Botkin (Steering Committee)

University of Utah

Wylie Burke (Steering Committee Chair)

University of Washington

Charlisse Caga-Anan

National Cancer Institute

Virginia Cain

National Center for Health Statistics

Charlotte Carlson

University of Michigan

Heather Carroll

Social & Scientific Systems, Inc.

Sarah Carter

J. Craig Venter Institute

Kee Chan

Boston University

Danyang Chen

Pennsylvania Department of Health

Mildred Cho (Steering Committee)

Stanford University School of Medicine

Yoonjoung Choi

U.S. Agency for International Development

Winnie Chung

Centers for Disease Control and Prevention

Constance Citro

CNSTAT, National Research Council

Ellen Wright Clayton (Steering Committee)

Vanderbilt University

Nancy Conrad

Conrad Foundation

Elizabeth Cooksey

Ohio State University

Deborah Cool

Medical student

Dana Crawford

Vanderbilt University

Lauren Creamer

National Center for Health Statistics

Eileen M. Crimmins (Steering Committee)

University of Southern California

Carla Cuthbert

Centers for Disease Control and Prevention

Daniel Day

Avalere Health

Nancy Dole

University of North Carolina at Chapel Hill

Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×

Nicole Dowling

National Center on Birth Defects and Developmental Disabilities

Jennifer Dreyfus

Dreyfus Consulting LLC

Aaliyah Eaves-Leanos

Food and Drug Administration

Kelly Edwards

University of Washington

Anna Ettinger

National Children’s Study

Altovise Ewing

Johns Hopkins Center to Reduce Cancer Disparities

Margaret Farrell

National Cancer Institute

Colleen Gallagher

MD Anderson Cancer Center

Rosella Gardecki

CHRR at Ohio State University

John Gardenier

Retired (formerly National Center for Health Statistics)

Turkan Gardenier

Pragmatica Corp.

Jeremy Garrett

Children’s Mercy Bioethics Center

Nina Gold

Harvard Medical School

John Greco

Marisa Greenberg

Pennsylvania State University

Hermann Habermann

National Research Council

Carolyn Halpern

University of North Carolina at Chapel Hill

Tina Hambuch

Illumina Clinical Services Laboratory

Melissa Hamilton

Virginia Department of Health

Jennifer Harris

Norwegian Institute of Public Health

Sumaira Hassan

Dow University of Health Sciences

Barrie Hayes

University of North Carolina at Chapel Hill

Robert Hauser

DBASSE, National Research Council

Jeannine Helm

National Institute of Dental and Craniofacial Research/National Institutes of Health

Ingrid Holm

Boston Children’s Hospital

Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×

Juell Homco

University of Oklahoma

Julie Hunter

IBM

Galina Inzhakova

Kaiser Permanente

Chazeman Jackson

Office of Minority Health, Department of Health and Human Services

Gail Jarvik

University of Washington

Steven Joffe

University of Pennsylvania

Sharon Kardia

University of Michigan

Dave Kaufman

Johns Hopkins University

Eimear Kenny

Icahn School of Medicine at Mount Sinai

Muin Khoury

Centers for Disease Control and Prevention

Sangmi Kim

Georgia Regents University

Corinna Koebnick

Kaiser Permanente

Steven Kornblau

University of Texas MD Anderson Cancer Center

Ellen Kramarow

National Center for Health Statistics

David Lacher

National Center for Health Statistics

Liz Langlois

Tulane University

Mariana Lazo

Johns Hopkins University

Marie Leahy

National Center for Health Statistics

Jung Lee

Genesis Strategic Solutions, Inc.

Johanne Levesque

Statistics Canada

Rongling Li

National Human Genome Research Institute

Neranga Liyanaarachchi

Postgraduate Institute of Medicine, Colombo

Nicole Lockhart

National Human Genome Research Institute

Amy Lossie

National Institutes of Health

Susan Lukacs

National Center for Health Statistics

Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×

Andrea Mackay

National Center for Health Statistics

Jennifer Madans

National Center for Health Statistics

Jennifer Malinowski

Vanderbilt University

Cathy McCarty

Essentia Institute of Rural Health

Martha McClintock

University of Chicago

Jean McEwen

National Human Genome Research Institute

Jenna McGwin

American Psychological Association

Scott Mclean

Statistics Canada

Geraldine McQuillan

National Center for Health Statistics

Lori Merrill

Westat

Danielle Metterville

Partners Center for Personalized Genetic Medicine

Julia Milton

Consortium of Social Science Associations

John Moye

National Children’s Study

Mugo Muita

United Nations High Commissioner for Refugees

Edgar Munoz

University of Texas Health Science Center

Carolyn Neal

National Center for Health Statistics

F. Javier Nieto

University of Wisconsin–Madison

Miki Nguyen

Kaiser Permanente Southern California

Sangeeta Panicker

American Psychological Association

Roxanne Parrott

Pennsylvania State University

Donald Patrick

University of Washington

Kathryn Porter

National Center for Health Statistics

Tabitha Powledge

Science writer and editor

Sandra Prucka

Eli Lilly and Company

Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×

Susan Queen

Office of the Assistant Secretary for Planning and Evaluation, Department of Health and Human Services

Kate Reed

The Jackson Laboratory

Teresa Rhodes

ALI

Henry Richardson

Georgetown University

Jeanne Rivard

National Research Council

Victor Rosa

PC

Gabriel Rosenfeld

National Cancer Institute

Lainie Ross

University of Chicago

Paul Scanlon

National Center for Health Statistics

Sheri Schully

National Cancer Institute

Murat Sincan

National Human Genome Research Institute

Julia Slutsman

National Institute of Child Health & Human Development

Teresa Solomon

The Rockefeller University

Edward Sondik

National Center for Health Statistics (retired)

James Sorace

Office of the Assistant Secretary for Planning and Evaluation, Department of Health and Human Services

Colleen Spees

Ohio State University

Erica Spotts

National Institutes of Health

Sylvia Trujillo

American Medical Association

Alicia Vargas

DC Cancer Registry, Department of Health

Christine Vaupel

Genoptix Medical Laboratory

Caer Rohrer Vitek

Mayo Clinic

Berna Watson

California Department of Public Health

Carol Weil

National Cancer Institute

David Weir

University of Michigan

Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×

Karen Whitaker

National Center for Health Statistics

Marc Williams

Geisinger Genomic Medicine Institute

Saba Wolday

Howard University

Susan Wolf

University of Minnesota–Minneapolis

Joseph Woodring

Centers for Disease Control and Prevention

Amber Worthington

Pennsylvania State University

Melanie Young

Environmental Protection Agency

Nicholas Zill

Independent psychologist

Oliver Zill

University of California, San Francisco

Shonia Zollicoffer

Centers for Disease Control and Prevention

Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×

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Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×
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Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×
Page 80
Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×
Page 81
Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×
Page 82
Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×
Page 83
Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×
Page 84
Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×
Page 85
Suggested Citation:"Appendix B: List of Registrants." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
×
Page 86
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Population surveys traditionally collect information from respondents about their circumstances, behaviors, attitudes, and other characteristics. In recent years, many surveys have been collecting not only questionnaire answers, but also biologic specimens such as blood samples, saliva, and buccal swabs, from which a respondent's DNA can be ascertained along with other biomarkers (e.g., the level of a certain protein in the blood). The National Health and Nutrition Examination Survey (NHANES), sponsored by the National Center for Health Statistics (NCHS), has been collecting and storing genetic specimens since 1991, and other surveys, such as the Health and Retirement Study (HRS) funded by the National Institute on Aging, have followed suit. In order to give their informed consent to participate in a survey, respondents need to know the disposition and use of their data. Will their data be used for one research project and then destroyed, or will they be archived for secondary use? Sponsors of repeated cross-sectional surveys, such as NHANES, and of longitudinal surveys that follow panels of individuals over time, such as HRS, generally want to retain data for a wide range of secondary uses, many of which are not explicitly foreseen at the time of data collection. They typically inform respondents that their data will be stored in a secure manner and may be provided to researchers with suitable protections against individual identification.

The addition of biologic specimens to a survey adds complications for storing, protecting, and providing access to such data and measurements made from them. There are also questions of whether, when, and for which biologic measurements the results should be reported back to individual respondents. Recently, the cost of full genomic sequencing has plummeted, and research findings are beginning to accumulate that bear up under replication and that potentially have clinical implications for a respondent. For example, knowing that one possesses a certain gene or gene sequence might suggest that one should seek a certain kind of treatment or genetic counseling or inform one's blood relatives. Biomedical research studies, in which participants are asked to donate tissues for genetic studies and are usually told that they will not be contacted with any results, are increasingly confronting the issue of when and which DNA results to return to participants.

Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey is the summary of a workshop convened in February 2013 by the Committee on National Statistics in the Division of Behavioral and Social Sciences and Education of the National Research Council. This report considers how population surveys, in particular NHANES, should implement the reporting of results from genomic research using stored specimens and address informed consent for future data collection as well as for the use of banked specimens covered by prior informed consent agreements. The report will be of interest to survey organizations that include or contemplate including the collection of biologic specimens in population surveys for storing for genetic research. The issues involved are important for advancing social, behavioral, and biomedical knowledge while appropriately respecting and protecting individual survey respondents.

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