National Academies Press: OpenBook
« Previous: References
Suggested Citation:"Acronyms." 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.
×

Acronyms

ACMG American College of Medical Genetics and Genomics
Add Health National Longitudinal Study of Adolescent Health
 
BMI body mass index
 
CAP College of American Pathologists
CDC Centers for Disease Control and Prevention
CLIA Clinical Laboratory Improvement Amendments
ClinSeq a large-scale medical sequencing clinical research pilot study (sponsored by the National Human Genome Research Institute)
CSER Clinical Sequencing Research Project
 
dbGaP database of Genotypes and Phenotypes (developed by the National Center for Biotechnology Information)
DNA deoxyribonucleic acid, a molecule that encodes genetic instructions
EGAPP Evaluation of Genomic Applications in Practice and Prevention Initiative Working Group
eMERGE electronic MEdical Records and GEnomics Network
 
GENEVA Gene Environment Association Studies consortium
Suggested Citation:"Acronyms." 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.
×
GIFs genetic incidental findings
GWAS genome-wide association study that examines many common genetic variants in different individuals to see if any variant is associated with a trait
 
HapMap the International HapMap Project is a multicountry effort to identify and catalog genetic similarities and differences in human beings
HIV Human Immunodeficiency Virus, a slowly replicating retrovirus that causes the acquired immune deficiency syndrome
HRS Health and Retirement Study
 
IOM Institute of Medicine
IRB institutional review board
 
NCHS National Center for Health Statistics
NCS National Children’s Study
NHANES National Health and Nutrition Examination Survey
NHGRI National Human Genome Research Institute
NIH National Institutes of Health
NRC National Research Council
NSHAP National Social Life, Health, and Aging Project
 
PEER Genetic Alliance’s Platform for Engaging Everyone Responsibly
PRIM&R Public Responsibility in Medicine and Research consortium
 
SNPs single nucleotide polymorphisms, the most common type of genetic variation among people.
 
WLS Wisconsin Longitudinal Study
Suggested Citation:"Acronyms." 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 73
Suggested Citation:"Acronyms." 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 74
Next: Appendix A: Workshop Agenda »
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 Get This Book
×
Buy Paperback | $40.00 Buy Ebook | $31.99
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

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.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!