Cells and Surveys

Excerpt

This meeting brought together demographers, economists, epidemiologists, ethicists, molecular biologists, physiologists, geneticists, pathologists, and sociologists, in addition to representatives of numerous government agencies. The workshop and this resultant volume sought to address a range of questions. What can social science, and demography in particular, reasonably expect to learn from biological information? Which genetic, pedigree, historical, and environmental data ought to be collected in order to be most useful to a wide range of scientists? Are there likely to be unintended side effects of amassing biological data (for example, what will attempts to collect bioindicators do to survey response rates, or to the quality of self-reported data)? How might ethical duties to research subjects change with the collection of bioindicators? How will confidentiality issues be handled? The methodological challenges for marrying large population surveys to genetic hypotheses are complex and not easily solved, in part because extant surveys have been structured and funded to address a set of important nongenetic scientific questions.

Contents

• THE NATIONAL ACADEMIES
• COMMITTEE ON POPULATION
• CONTRIBUTORS
• Preface
• 1. Collecting Biological Indicators in Household Surveys
  Caleb E. Finch and James W. Vaupel.
  • WHICH INDICATORS?
  • WHAT BENEFITS?
  • WHAT COSTS?
  • REFERENCES
• 2. Integrating Biology into Demographic Research on Health and Aging (With a Focus on the MacArthur Study of Successful Aging)
  Eileen M. Crimmins and Teresa Seeman.
  • BACKGROUND
  • THE INCORPORATION OF ADDITIONAL BIOLOGICAL INDICATORS
  • COLLECTION OF BIOLOGICAL INFORMATION IN THE MacARTHUR STUDY
  • SUMMARY AND CONCLUSIONS
  • REFERENCES
• 3. Biological Material in Household Surveys: The Interface Between Epidemiology and Genetics
  Kaare Christensen.
  • DO GENETIC FACTORS PLAY A SIGNIFICANT ROLE IN THE VARIATION IN SURVIVAL, REPRODUCTION, HEALTH, AND BEHAVIOR?
  • GENE-ENVIRONMENT INTERACTIONS
  • FEASIBILITY OF COLLECTING BIOLOGICAL MATERIAL IN HOUSEHOLD SURVEYS
  • CONCLUSION
  • REFERENCES
• 4. Demography in the Age of Genomics: A First Look at the Prospects
  Douglas Ewbank.
  • AN OUTLINE OF GENETIC EPIDEMIOLOGY
  • DEMOGRAPHY AND THE GENETICS OF COMPLEX TRAITS
  • POTENTIAL USES OF GENETIC INFORMATION IN DEMOGRAPHIC RESEARCH
  • IDENTIFYING GENES THAT MIGHT BE IMPORTANT FOR DEMOGRAPHY
  • HOW MANY DEMOGENES ARE THERE AND HOW SOON WILL WE FIND THEM?
  • SUMMARY AND RECOMMENDATIONS
  • REFERENCES
• 5. The Value of Sibling and Other “Relational” Data for Biodemography and Genetic Epidemiology
  George P. Vogler.
  • SOURCES OF VARIABILITY FOR QUANTITATIVE TRAITS
  • SOURCES OF RESEMBLANCE AMONG FAMILY MEMBERS
  • GENE MAPPING
  • ASSOCIATION STUDIES
  • ENVIRONMENT “MAPPING”
  • OPPORTUNITIES FOR INTEGRATED MODELS
  • REFERENCES
• 6. Opportunities for Population-Based Research on Aging Human Subjects: Pathology and Genetics
  George M. Martin and Hu Qubai.
  • GENETICS
  • PATHOLOGY
  • SUMMARY
  • REFERENCES
• 7. Indicators of Function in the Geriatric Population
  Jeffrey B. Halter and David B. Reuben.
  • LEVELS OF FUNCTION
  • TYPES OF FUNCTION—TOTAL ORGANISM
  • MEASURES OF FUNCTION
  • REFERENCES
• 8. Biomarkers and the Genetics of Aging in Mice
  Richard A. Miller.
  • BASIC DEFINITIONS AND PREMISES
  • BIOMARKERS OF AGING
  • GENETIC ANALYSIS OF LONGEVITY, OF AGING, AND OF AGE-SENSITIVE TRAITS IN MICE
  • GENE EXPRESSION SCREENING
  • BIOLOGICAL MATERIALS SUITABLE FOR LARGE-SCALE HUMAN STUDIES
  • REFERENCES
• 9. The Relevance of Animal Models for Human Populations
  Gerald E. McClearn.
  • MODEL SYSTEMS
  • MANIPULATION OF THE GENOTYPE
  • SUMMARY AND CONCLUSION
  • REFERENCES
• 10. Applying Genetic Study Designs to Social and Behavioral Population Surveys
  Robert B. Wallace.
  • DEFINING THE PHENOTYPIC OUTCOMES IN POPULATION STUDIES
  • ASSESSING THE FAMILIALITY AND HERITABILITY OF DISEASES, CONDITIONS, AND AGE-RELATED CHANGE
  • STUDY DESIGNS AND GENETIC BIOINDICATOR APPLICATIONS IN POPULATION STUDIES
  • THE LOGISTICS OF SPECIMEN COLLECTION IN POPULATION SURVEYS
  • CONCLUSION
  • REFERENCES
• 11. Stretching Social Surveys to Include Bioindicators: Possibilities for the Health and Retirement Study, Experience from the Taiwan Study of the Elderly
  Maxine Weinstein and Robert J. Willis.
  • SURVEY OVERVIEWS
  • WHAT CAN WE LEARN FROM BIOINDICATORS IN SOCIAL SURVEYS?
  • POTENTIAL LIABILITIES OF ADDING BIOMARKERS
  • OBLIGATIONS TO THE PARTICIPANTS
  • FUTURE DIRECTIONS
  • REFERENCES
• 12. Informed Consent for the Collection of Biological Samples in Household Surveys
  Jeffrey R. Botkin.
  • INFORMED CONSENT
  • THE COMMON RULE
  • RISKS OF RESEARCH ON TISSUE SAMPLES
  • TYPES OF REPOSITORIES AND SAMPLES
  • ELEMENTS OF INFORMED CONSENT
  • INCLUSION OF VULNERABLE SUBJECTS IN RESEARCH
  • FORMAT FOR CONSENT FORMS
  • CONCLUSIONS
  • REFERENCES
• 13. Ethical and Social Issues in Incorporating Genetic Research into Survey Studies
  Sharon J. Durfy.
  • BACKGROUND
  • IS GENETIC INFORMATION SPECIAL?
  • PRIVACY OF GENETIC INFORMATION IN RESEARCH STUDIES
  • ACCESS TO AND OWNERSHIP OF GENETIC INFORMATION AND SAMPLES
  • PSYCHOLOGICAL RISKS OF PARTICIPATION IN GENETIC RESEARCH STUDIES
  • GROUP-RELATED HARMS OF PARTICIPATION IN GENETIC RESEARCH STUDIES
  • NEW DIRECTIONS
  • REFERENCES
• 14. Biosocial Opportunities for Surveys
  Kenneth W. Wachter.
• Suggested Readings
• Glossary

This study was supported by Task Order 49 under NIH Contract No. N01-OD-4-2139 between the National Academy of Sciences and the Office of the Demography of Aging, National Institute of Aging, National Institutes of Health, U.S. Department of Health and Human Services. Additional funding was provided by the Office of the Director of the Behavioral and Social Research Program, National Institutes of Health, by the William and Flora Hewlett Foundation, and by the Andrew W. Mellon Foundation.

Suggested citation:

National Research Council (2000) Cells and Surveys: Should Biological Measures Be Included in Social Science Research? Committee on Population. Caleb E. Finch, James W. Vaupel, and Kevin Kinsella, eds. Commission on Behavioral and Social Sciences and Education. Washington, D.C.: National Academy Press.

Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project.

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.