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Stretching Social Surveys to Include Bioindicators: Possibilities for the Health and Retirement Study, Experience from the Taiwan Study of the Elderly
Pages 250-275

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From page 250...
... The surveys allow us to target representative populations; to generalize findings based on insights from qualitative, local, or small, indepth investigations; and to replicate the results across time and across cultural settings. In all, large-scale surveys have been a powerful tool for social scientists.
From page 251...
... Recent growth in knowledge about the biology of aging and the development of mechanisms that allow biological markers to be collected as part of large-scale surveys have stimulated discussion about whether the HRS should be expanded to include the collection of biological data. The Taiwan Study offers a concrete example of the scientific purposes and the practical costs and benefits associated with collecting biomarkers within such a social survey context.
From page 252...
... Following the death of a respondent, a proxy interview is obtained to collect information about health, the utilization of medical care and decision-making at the end of life, and about the disposition of the decedent's assets. In addition to survey data, the HRS is linked to several bodies of administrative data including Social Security earnings and benefit histories, Medicare cost and diagnoses, employer pension plan characteristics, and the National Death Index.
From page 253...
... A wide variety of bioindicators are potentially available for an expansion of social surveys. In the Taiwan study, the protocol for the 1998 collection of biological markers comprised several segments including: 1Persons in institutionalized settings are likely to be less healthy than the noninstitutionalized population.
From page 254...
... In this paper we discuss the following: obtaining population-representative data from nonclinical samples; calibrating self-reports with other measures of health and disease; and explicating pathways and elaborating the causal linkages between social environment and health. Finally, although our focus is on mid-level biological indicators, we will suggest some considerations related to linking genetic markers with survey materials.
From page 255...
... Of course, troublesome ethical and confidentiality issues concerning HRS respondents arise precisely because of these potential interactions and behavioral responses. Even in the cross-section, however, the data can be valuable.
From page 256...
... The participants responded to a 90-minute interview in which health status was assessed, and they provided blood specimens and 12hour overnight urine specimens (Berkman et al., 1993; Seeman et al., 1997~. The participants ranged in age from 70 to 79 years old (the Taiwan participants were 67 to 94~.
From page 257...
... , for example, shows that the consistency of reports of diabetes across surveys taken between 1989 and 1996 as part of the Taiwan Study of the Elderly averaged just over 80 percent. In the United States, the analogous figure from the National Health and Nutrition Examination Survey (NHANES)
From page 258...
... This supplementary project would provide a highly valuable body of data on the prevalence of dementia in a nationally representative sample, together with a rich array of information with which to study the dynamics over time of the burden of this disease on families and the public. If the clinical diagnosis proves to be sufficiently well correlated with survey measures of cognitive decline and disability or Medicare diagnoses, it may be possible for researchers to impute the dementia status of HRS respondents who are not assessed in the supplementary clinical protocol.
From page 259...
... Explicating Pathways and Elaborating Causal Linkages Between Social Environment and Health Health at any age, but especially among the elderly, embodies and reflects the accumulation of complex interactions among genetic endowment, developmental influences that affect gene expression, and life experience including environmental exposures. A large literature in sociology, economics, and epidemiology has been devoted to documenting and exploring the associations between the social environment and health outcomes; another area of intensive research has been the relation between challenge (i.e., stress-provoking experience)
From page 260...
... Over many years, social scientists have examined and they continue to explore the relationships among health, position in social hierarchy, and social connection that are shown in Figure 11-1. It is now well established that there is a simple, direct, monotonic relation between socioeconomic status measured across the multiple dimensions of income, education, and occupation and both morbidity and mortality.
From page 261...
... Apart from the HRS and the Taiwan Study, these associations have all been well documented by repeated, large-scale surveys. Still, little is known about how the social environment is linked to the physiological factors that influence well-being and mortality, so the biological pathways through which the social factors influence health remain largely unspecified.
From page 262...
... To date, the HRS has relied completely on self-reports of an individual's subjective health status, health conditions, and functional status, and on their self-reports of medical utilization, health insurance, and outof-pocket costs. Only in the case of cognitive status and depression does the HRS provide measures that are similar in part to those that would be obtained in a medical setting.
From page 263...
... Linking Genetic Markers with Survey Materials The rapid advance of knowledge in genetics and the relationship of genetics to health and behavior have led to suggestions that we collect biological specimens for genetic typing from respondents of populationrepresentative surveys. In particular, the discovery of the link between late onset Alzheimer's disease and the APOE e4 genotype (Corder et al., 1993)
From page 264...
... If genetic information at birth is predictive of health conditions that occur later in life, will there emerge a market for "genetic insurance"? Providing insurance to populations with heterogeneous risks is already an important and difficult issue both at the theoretical level and for practical policy, in part because differences in information between those supplying and demanding health insurance lead to possibilities of adverse selection and instability of insurance markets (see Phelps, 1992, for a discussion)
From page 265...
... Other examples of potential research interest might be the role of genetics in the intergenerational transmission of health status or studies of the interaction between gene expression and measures of the economic and social environment over the life cycle. These examples of research possibilities from the collection of genetic information in the HRS also serve to warn us about the limitations and dangers of the HRS as a vehicle for such data collections.
From page 266...
... lust under 72 percent of the targeted respondents completed the full protocol: they replied to a short survey that was administered by a public health nurse; they collected an overnight 12-hour urine specimen; they underwent a physical examination and provided a brief medical history in hospital; and they had blood drawn and provided a spot urine specimen in hospital. Another 23 percent of the targeted respondents could not be located or refused to participate.
From page 267...
... For the Taiwan study, as for the HRS, PSUs are located geographically throughout the country but, of course, the total area is much smaller. The collection of the 12-hour urine specimen also adds substantially to both the expense and the complexity because it involves an additional visit to the respondent's home for the delivery of the collection supplies, and because the equipment and assay costs for cortisol and the catecholamines are high.
From page 268...
... The Taiwan protocol also involves extensive cooperation with the local public health nursing staff and with hospitals throughout the country. Drivers and interviewers who are knowledgeable about the local geographic areas are needed to find respondents; deliver and explain the urine collection equipment; and pick up, drop off, and return participants for the hospital visit.
From page 269...
... Overall, it is important to ask whether there are mechanisms that meet acceptable ethical standards and allow for the collection of biological material without creating unacceptable risks of distorting the data either through the data collection process itself or by altering the behavior of respondents. OBLIGATIONS TO THE PARTICIPANTS Providing a Benefit to the ParticipantsDiagnosis, Treatment, and Counsel A primary consideration in the design of the Taiwan biomarker study has been ensuring that our participants benefit from their involvement in the study.
From page 270...
... Our experience to date has been that these children have played an active role in the informed consent decision process. In our 1997/1998 biomarker study, only seven of the participants had cognitive impairments that created concerns regarding comprehension of the study protocol.
From page 271...
... unknown implications of biological materials that may be established in the future, and the extensive linkage across both private and government-run data archives raise the potential consequences of violations to new levels that require strict oversight. FUTURE DIRECTIONS Given the high monetary and nonmonetary costs of adding biomarker data to household surveys, we believe that some consideration should also be given to the turnabout alternative of adding social, psychological, and economic information to health studies in which biological specimens and other detailed biomedical data are already being collected.
From page 272...
... Much of the research that emerges from large-scale social surveys falls at the intersection of description and prescription. The collection of health-related indicators based on biological markers forges new ties to medical and epidemiological research, research that has strong, explicit, and normative traditions of advocacy.
From page 273...
... Rowe 1993 High, usual and impaired functioning in community-dwelling older men and women: Findings from the MacArthur Foundation Research Newtwork on Successful Aging. Clinical Epidemiology 46:1129-1140.
From page 274...
... 2000 Experience with health examination surveys in developing countries. Paper presented at the Conference on Biological and Clinical Data Collection in National Surveys Potential and Issues, National Academies, Washington, DC, January 24-25.
From page 275...
... Vaessen, M 2000 Issues in collecting biological and clinical data in population-based surveys in developing countries.


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