Conducting Biosocial Surveys Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata (2010) / Chapter Skim
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1 Introduction
1 Introduction
Pages 7-18
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From page 7... ...
Social science researchers wishing to collect biospecimens must address a wide variety of additional legal, ethical, and social issues, as well as a number of practical issues related to the storage, retrieval, and sharing of data. For example, deriving biological data from biospecimens and linking them to social science databases adds considerable effort and costs associated with developing a biorepository, establishing data sharing policies, implementing an increas ingly complex informed consent process, establishing an additional process for reviewing how the biodata are going to be shared and used for secondary
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From page 8... ...
. In population-based research, biomarkers are often obtained by collecting biological specimens in nonclinical settings, but they can also be derived from, for example, anthropometric measures; accelerometry based activity monitors; spirometry; or other measures of functional capacity, heart rate, blood pressure, and grip.
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From page 9... ...
The collection of biological specimens in population surveys that also collect data on socioeconomic, demographic, behavioral, physical health, and psychosocial factors opens up new avenues for research and may allow researchers to build integrated biosocial models of various biological and social phenomena. For example, by combining biological and social survey data, it may be possible to document the linkages among social, behavioral, and biological processes that affect health and various other measures of well-being.
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From page 10... ...
And while the specimens themselves are depletable, the biodata derived from them have potentially limitless uses. The trade-offs remain complex here as well, however, since the use of biospecimens and biodata for purposes other than the original research raises issues related to informed consent (see Chapter 4)
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From page 11... ...
Even when the challenges are similar to those familiar to biomedical researchers, they will be new to most social scientists engaging in biosocial research. PuBLIC ATTITuDES, PERCEPTIONS, AND RATES OF PARTICIPATION Public Attitudes Toward the Collection of Biospecimens Because the collection of biospecimens as part of social surveys depends on the willingness of individuals to contribute them, public attitudes and percep tions play an important role in the success of such efforts, and researchers must take these attitudes into account.
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From page 12... ...
Additionally, the development of databases of genetic specimens that are stored for long periods increases not only the research potential but also the potential risks as new knowledge is dis covered about genetic associations with health and behavior. Further increasing both the potential for innovative research and the potential for breach of confi dentiality is the growing practice of linking survey records with administrative records, such as Social Security benefits and Medicare claim files.
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From page 13... ...
Thus a total of 57 percent would agree to having their information used if certain privacy-oriented conditions were met. Observed Participation Rates in Social Surveys Collecting Biospecimens Evidence from a number of different social surveys provides a sounder basis than opinion surveys for assessing people's willingness to participate in social science research that includes the collection of biospecimens.
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From page 14... ...
for saliva collection by mail for DNA analysis in the Wisconsin Longitudinal Study. ISSuES SuRROuNDINg THE COLLECTION OF BIOSPECIMENS IN SOCIAL SuRvEyS Survey researchers intending to collect biospecimens must grapple with a number of issues, many of which will be unfamiliar to them.
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From page 15... ...
Program asked the National Academies to convene an ad hoc panel of experts for the purpose of identifying best practices with respect to collecting, storing, protecting, and accessing biospecimens collected in social science surveys and the biodata derived therefrom. It is worth stating at the outset that these issues are not new: the research community is familiar with the challenge of reconciling the benefits of providing wider access to research data and the resulting increased risk of a breach of confidentiality.
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From page 16... ...
The workshop discussions were designed to explore issues related to informed consent, data collection, confidentiality protection, data archiving, and data access for multipurpose population surveys that collect biological specimens and measures in addition to socioeconomic/demographic, behavioral/lifestyle, and physical and mental health measures. Specifically, the panel was tasked to review the following issues, with particular reference to surveys sponsored by NIA: • nformation that should be provided to survey respondents for informed i consent and how the language of consent forms affects people's willing ness to participate in surveys; • ethods for collecting and processing genetic and biological speci m mens and measures to minimize the burden on respondents, maximize research potential, and protect confidentiality and privacy; • elevant laws, regulations, and policies, including the Common Rule for r Protection of Human Subjects, the Confidential Information Protection and Statistical Efficiency Act of 2002, the 2002 regulations issued under the Health Insurance Portability and Accountability Act of 1996, and relevant National Institutes of Health policies on data sharing, certifi cates of confidentiality, and related topics, including the repository for genomewide association studies; • actors for IRBs to consider in reviewing requests for the collection of f biological specimens and measures in surveys; • he risks of and evidence for actual misuse of biological specimens and t measures in surveys; • hether and which statistical techniques can be used to make genetic w and other biological measures anonymous in microdata files while pre serving their utility for research; • he costs and benefits of alternative systems for archiving genetic and t other biological specimens and measures derived from population sur veys to permit later research use while protecting confidentiality; and • he costs and benefits of alternative forms of access to microdata con t taining genetic and biological measures, such as secure research data centers and licensing.
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From page 17... ...
Chapter 4 addresses issues related to informed consent, including biobanking, the use of blanket consent, and the role of IRBs. Finally, Chapter 5 offers the panel's recommendations for practices and procedures that can best facilitate research and protect participants as the collection of biospecimens in social science surveys moves forward over the next 5 to 10 years.
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