Protecting Participants and Facilitating Social and Behavioral Sciences Research (2003) / Chapter Skim
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5 Enhancing Confidentiality Protection
5 Enhancing Confidentiality Protection
Pages 113-142
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From page 113... ...
However, for much SBES research, confidentiality protection is a necessary and vitally important component of the study plan. ~ Even the assignment of arbitrary identifiers may not protect against re-identification so long as the link between the arbitrary codes and originally collected real identifiers (e.g., name)
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From page 114... ...
Most of these factors affect the disclosure risk for dissemination for secondary use, but some also have implications for the disclosure risk as a result of data collection, processing, and storage. They include the following: · There are growing numbers and variety of publicly available microdata files for secondary analysis.
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From page 115... ...
We continue with the history of legislative protection for data collected by the Census Bureau and other federal statistical agencies that are widely used by SBES researchers and others. (for decennial census data, legislative protection goes back to the 1920s.)
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From page 116... ...
. Beyond these two references, however, the Common Rule provides no guidance, even on traditional confidentiality protections for laboratory, survey, ethnographic, and other originally collected data, such as assigning new identifiers and destroying the link to the original identifiers, keeping data records in locked files, and the like.4 Guidance in the IRB Guidebook (Office for Protection from Research Risks, 1993:Ch.III.D)
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From page 117... ...
The version of the Privacy Rule issued by DHHS in December 2000 drew substantial criticism from the health care community, including researchers, who complained that the provisions for research access s The New York Court of Appeals upheld the authority of confidentiality certificates in 1973 (for more information, see http://grantsl.nih.gov/grants/policy/coc [4/10/03]
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From page 118... ...
Second, a covered entity may release a "de-identified" data set for research use without requiring the researcher to sign an agreement provided a more comprehensive list of identifiers has been removed. Third, a covered entity may employ a statistician to attest that the risk of re-identification is very small because of the nature of the data (e.g., in cases when the data have been subject to statistical manipulationsee "Protection Methods of Statistical Agencies," below)
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From page 119... ...
No publication shall be made by the Census Office whereby the data furnished by any particular establishment or individual can be identified, nor shall the Director of the Census permit anyone other than the sworn employees of the Census Office to examine the individual reports. Another section provided heavy penalties, which currently include large fines and up to 5 years' imprisonment, for Census Bureau employees who breach confidentiality.
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From page 120... ...
It is not known whether individual census reports were ever provided to people other than sworn Census Bureau employees. However, census tract-level tabulations of Japanese Americans from the 1940 census were provided to the Office of Naval Intelligence, and maps of city blocks with counts of Japanese Americans were provided to the Western Defense Command of the War Department, which facilitated internment of legal residents of Japanese origin.
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From page 121... ...
Since that time, the Bureau has an unblemished record of protecting confidentiality for the data it collects from respondents to censuses and surveys, despite the increasing challenges it faces to such protections Its standing Disclosure Review Board reviews every data product the Bureau makes available for public use to ensure that disclosure risks .
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From page 122... ...
It is not yet clear whether the confidentiality protections in the E-Government Act would take precedence over Section 508 of the Patriot Act. Federal Statistical Agencies and IRBs Most but not all cabinet departments that house federal statistical agencies have formally adopted the Common Rule (exceptions are the U.S.
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From page 123... ...
PROTECTING CONFIDENTIALITY TODAY Increasing Challenges The development of new data collection and dissemination technologies is arguably the principal factor increasing disclosure risks for research data that are made available by federal statistical agencies and other providers today. Other factors that play a role include increases in the volume and richness of the data collected (in turn made possible by technological advances)
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From page 124... ...
Hence, the barriers to use were high. The spread of personal computing in the 1980s and l990s greatly expanded the number of users who conducted secondary analyses of summary and microdata files from statistical agencies and other sources.
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From page 125... ...
In terms of sheer volume of observations, PUMS files containing microdata from the decennial census long-form sample expanded over this period from a 1-in-1,000 sample of the population in 1960, totaling more than 180,000 records, to as large as a 1-in-20 sample of the population in 2000, totaling more than 10 million records. Microdata files from the major household surveys of statistical agencies are also large and complex: for example, the Current Population Survey March Income Supplement contains data for more than 70,000 households and 180,000 people with detailed information on employment, family income, and household composition.
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From page 126... ...
Linkages are performed or planned with Medicare records; social security earnings records; National Death Index; employer health plans; and employer pension plans (summary plan descriptions)
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From page 127... ...
If participating, for each plan, whether defined benefit or defined contribution or combination For each defined contribution, type of plan, how much accumulated, how much employer contributes, how much respondent contributes, how many years in plan in total, whether can choose how money is invested and whether mostly stock or interest-earning assets or evenly split, whether can receive lump sum or installments, youngest age when could start receiving benefits, what age expect to receive benefits and in what form For each defined benefit, age for full benefits and how much, expected earnings at full retirement age with this employer, age for reduced benefits and how much benefits would be reduced, whether plan benefits depend on social security benefits, whether can take lump sum If not participating, whether employer offers pension plans, whether respondent eligible and intends to participate in future and whether employer contributes Heath Status Self-reported health status now and compared with a year ago Self-reported emotional health status Difficulty with activities of daily living, including instrumental activities Self-reported medical conditions indicated by a doctor (high blood pressure, diabetes, cancer, chronic lung disease, strokes, emotional problems, arthritis, other problems, broken bones, pain, poor eyesight, hearing problems) Self-reports of smoking, drinking, exercise Cognition battery and mood assessment and clinical depression battery Self-reported work disabilities and employer accommodations Health Insurance Coverage Type of coverage: government, employer, individual, other If employer coverage, whether employee pays part or all of premium, whether available to retirees and whether employer pays part or all, whether retirees pay the same as other employees, whether spouses can be covered and whether retirees pay the same for spouse coverage as other employees If individual coverage, type and cost Whether ever turned down for coverage and why Health Care Use and Costs Stays in hospital or nursing home last 12 months Doctor visits last 12 months Home health care last 12 months Itemized medical care deductions Cost of individual insurance Total and out-of-pocket medical care expenditures, by category of service Assets and Debts Value of house, mobile home and site, farm, ranch Amount of mortgage, second mortgage, home equity loan Value of second home, time-share, amount of mortgage Net value of motor home or recreational vehicle Net value of other real estate, other vehicles, business Amount in Individual Retirement Accounts or Keogh accounts Net value of stocks, mutual funds Money in checking, saving, and money market accounts
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From page 128... ...
SBES Research Environment Changes in the SBES research environment have increased the risks of disclosure and the need to pay heed to confidentiality protection. As a result of technological developments in data processing, dissemination, and analysis, and the increased richness, variety, and volume of microdata sets, large numbers of SBES researchers engage in secondary analysis.
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From page 129... ...
Yet once achieved, such linkages raise disclosure risks if the researcher does not take adequate measures to protect confidentiality. The interests of researchers in access to rich data sets has often resulted in an adversarial stance with data providers, particularly statistical agencies.
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From page 130... ...
could find it difficult to determine how to share data with others in a way that does not increase disclosure risks. Protection Methods of Statistical Agencies Because their mission is both to provide data for public use and to ensure that individual respondents are not re-identified, federal statistical agencies are leaders in the development of techniques and policies for confidentiality protection at every stage of data development (see Doyle et al., 20011.
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From page 131... ...
Every data product the Bureau makes available for public use must be reviewed by its Disclosure Review Board to ensure that disclosure risks have been minimized. For summary (tabular data)
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From page 132... ...
At present, there are six such centers: the Bureau's Boston Regional Office, Carnegie Mellon University, Duke University, the University of Michigan, and jointly managed sites at the Berkeley and Los Angeles campuses of the University of California. Other Statistical Agencies Other federal statistical agencies use similar methods to those of the Census Bureau to protect data during the stages of collection, processing, and storage and to minimize disclosure risks for data products that are made publicly available (see Federal Committee on Statistical Methodology, 1994~.
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From page 133... ...
Toward this goal: . researchers should explicitly describe procedures to protect the confidentiality of the data to be collected in protocols they submit to IRBs; · IRBs should pay close attention to the adequacy of proposed procedures for protecting confidentiality; federal funding agencies should support research on techniques to protect the confidentiality of SBES data that are made available for research use; and the Office for Human Research Protections should regularly promulgate good practices in analyzing disclosure risks and limiting those risks.
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From page 134... ...
OHRP has a leadership responsibility for guidance on issues of human research participant protection. Because it is woefully inefficient for every IRB many of which are overburdened- to take individual responsibility for staying abreast of threats to and state-of-the-art ways for protection of confidentiality, OHRP should regularly assemble and disseminate information on good practices for analyzing disclosure risk and minimizing that risk at every stage of a research projectfrom data collection to dissemination of results and sharing of data for secondary analysis.
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From page 135... ...
informed consent processes and documentation should address the extent and nature of confidentiality protection; and (5) IRBs should, as standard procedure, exempt from review studies that propose to use publicly available microdata files from sources that follow good protection practices and obtain informed consent from participants (see "A Confidentiality Protection System for Public-Use Microdata," below)
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From page 136... ...
Protection for Every Stage of Research For projects that involve original data collection, IRBs will need to check that appropriate confidentiality protection procedures are proposed for each project stage, as applicable: · recruitment of participants- protection practices will vary depending on the method of recruitment (e.g., sending a letter that contains specific information about the prospective participant requires more attention to confidentiality protection than does a random-digit telephone dialing procedure)
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From page 137... ...
Confidentiality Protection and Informed Consent In reviewing research that involves original data collection, IRBs need to consider the adequacy of the information about confidentiality protection that is provided to participants through the informed consent process (see also Chapter 41. For example, participants should be informed that the data will be made available for research purposes in a form that protects against the risk of re-identification.
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From page 138... ...
The new system should build upon existing and new data archives and statistical agencies. Recommendation 5.3: Participating archives in the new public-use microdata protection system should certify to researchers whether data sets obtained from such an archive are sufficiently protected against disclosure to be acceptable for secondary analysis.
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From page 139... ...
Such a system would permit IRBs to exempt secondary analysis with such data from review as a matter of standard practice. t5 We have described how federal statistical agencies are in the forefront of efforts to protect the confidentiality of their data.
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From page 140... ...
A program of assurance for confidentiality protection procedures and certification of data files for secondary analysis will necessitate that participants in the program OHRP, federal statistical agencies, other data producers, and archives keep abreast of disclosure risks and state-of-the art protection procedures. Continued vigilance, together with sustained investment in disclosure risk analysis and confidentiality protection methods, will be necessary to assure IRBs, researchers, and participants that adequate protections are in place.
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From page 141... ...
, which seems too narrow a criterion given that the mission of the Bureau is to provide information for public use. Given the leverage that secondary data analysis provides for the advancement of knowledge in the social, behavioral, and economic sciences, it is clearly important for researchers, data producers, and data archives to work cooperatively to maximize that leverage while appropriately protecting the respondents who supplied the data.
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From page 142... ...
; and assigning such variables as specific occupation, industry, or ancestry to broad categories. Because of increasing concern about the ability to link census and survey microclata files with other data available through the Internet, the Bureau scaled back the data content somewhat on the 2000 census PUMS files in comparison with the 1990 census files.
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