Private Lives and Public Policies Confidentiality and Accessibility of Government Statistics (1993) / Chapter Skim
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3 Data Subjects
3 Data Subjects
Pages 61-90
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From page 61... ...
Statistical agencies have legal and ethical responsibilities toward the data subjects and `data providers who are the sources of clata used in their statistical programs. It is sometimes difficult for statistical agencies to decide just what constitutes ethical treat 61
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From page 62... ...
In the section that follows, we examine direct communication between agencies and individual data subjects or providers through the use of informed consent and notification procedures. We also examine issues re .
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From page 63... ...
Such activities are directed at the general public and at organizations that attempt to represent the interests of data subjects and data providers. INFORMED CONSENT AND NOTIFICATION Ethics and law demand that data providers be told about the conditions under which they are asked to supply information that will be used for statistical and research purposes.
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From page 64... ...
These requirements led to a much greater degree of uniformity in the informed consent and notification procedures used by federal statistical agencies. Legally, the Privacy Act requirements apply only to collection of data from individuals, but statistical agencies have also applied them, for the most part, to the collection of data from organizations.
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From page 65... ...
. Professional Association Guidelines The Privacy Act requirements were written in broad terms and dicI not answer all possible questions about what information should be included in informed consent and notification statements and how the information should be communicated to data providers in different kinds of data collections.
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From page 66... ...
In 1983, the ASA's Ad Hoc Committee on Professional Ethics published on a trial basis its Ethical Guidelines for Statistical Practice, which were formally adopted by the ASA Board in December 1988 {see American Statistical Association, 1983, 1989; see also Ellenberg, 19831. Two of the guidelines are directly relevant to informed consent in "collecting data for a statistical inquiry." The committee said that the data collectors should {American Statistical Association, 1989:24)
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From page 67... ...
During this same period, the trend has been toward the inclusion of more explicit information about planned linkages in informed consent or notification statements. If Social Security numbers are requested in survey interviews, it becomes a virtual necessity, regardless of any legal or ethical imperatives, to tell data providers how they will be used.
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From page 68... ...
If the uses are known at the time, the permission of data providers can be requested as part of the informed consent procedures. If they are not known when the data are being collected!
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From page 69... ...
reviewed the informed consent or notification statements for 15 data collection programs of federal statistical agencies, plus the statement included with individual income tax forms. He also reviewed three examples of informer!
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From page 70... ...
Finally, Mugge found that notification statements were clelivered to survey respondents in several different ways, including a transmittal letter, a separate Privacy Act notice, a question-andanswer sheet, a brochure describing various aspects of the survey, separate instructions for completing the questionnaire, and on the face sheet of the questionnaire itself. In several instances a multitiered approach was used; that is, the information was supplied at more that one stage, and a telephone number, frequently toll free, was provided for use by respondents wanting more information.
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From page 71... ...
Social scientists have wrestled with such questions {see, e.g., Beauchamp et al., 1982:Pt. Al, but, insofar as we have been able to determine, federal statistical agencies that unclertake or sponsor such studies do not have any generally accepted set of guidelines to refer to in developing their informed consent procedures.
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From page 72... ...
By and large, individuals do not have control over statistical uses of identifiable information about themselves that they or others supply to agencies like the Internal Revenue Service, the Social Security Administration, or the Health Care Financing Administration {the operating agency for Medicare) for administrative purposes.
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From page 73... ...
can work in both directions. Respondents to the Longitudinal Retirement History Survey were, in the final outcome, not allowed to waive any of the confidentiality protections that were given to their information as required by the Census Bureau's Title 13 authority.
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From page 74... ...
. The feasibility and cost of using informed consent procedures to cover some types of statistical and research uses of administrative records: Some records, like Social Security files containing date of birth .
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From page 75... ...
The goal should be to give each data provider as much information as is necessary to make his or her consent as informed as he or she wishes it to be. Recommendation 3.2 Basic information given to all data providers requested to participate in statistical surveys and censuses should include {aJ for data on persons, information needed to meet all Privacy Act requirements.
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From page 76... ...
In preparing an informed consent or notification statement, a statistical agency should carefully review the purposes and design of the data collection activity, especially when multiple contacts with respondents or linkages with data from other sources are planned or may prove to be desirable. Agencies should seek expert opinions as to what kinds of data are currently or may in the future be relevant to the goals of the statistical or research activity.
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From page 77... ...
There are many intermediate options under which data subjects would retain control over some uses but not others. Also at issue were the questions of how much information should be given to data subjects about such uses and, if they are to be given the opportunity to opt out in some instances, whether the mechanism should require affirmative informed consent or simply notification of their right to opt out (passive consent)
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From page 78... ...
Whenever provisions 1 and 2 both apply, those who supported this position believe that data subjects should be clearly informed of their option to withhold their data from certain kinds of statistical and research uses and that no pressure should be applied to dissuade them from exercising that option. They believe that a passive consent mechanism, which assumes consent except for data providers who, when given the opportunity, express their desire not to have their information used for such purposes, would be adequate to protect the interests of indivicluals.
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From page 79... ...
members preferred a different method of treating proposed statistical ant! research uses not directly related to the mission and function of the agency or system that collected the mandatory data.
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From page 80... ...
studies have conducted included experiments on informed consent procedures for a statistical survey of the general population. In the late 1970s, the Committee on National Statistics {National Research Council, 19791 conducted a face-toface survey in which the confidentiality assurances given to respondents were systematically varied.
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From page 81... ...
The review, originally prepared for the panel, includes some studies of passive consent procedures whereby data subjects or providers are notified that some step will be taken {e.g., their children will be enrolled in a school-related research stucly) unless they notify the researchers of their disapproval.
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From page 82... ...
Three federal statistical agencies, the Bureau of Labor Statistics, the Census Bureau, and the National Center for Health Statistics, have established small units to unclertake laboratory and field studies of the cognitive processes of respondents who are asked to comprehend survey questions, retrieve relevant information from memory, and make judgments about how to answer the questions. Most of the research has been aimed at improving questions on specific topics.
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From page 83... ...
for statistical purposes not directly related to the purposes for which the information was obtained. Most of the taxpayer opinion surveys, for example, included questions about statistical and other nontax uses of information provided on tax returns.
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From page 84... ...
For example, when taxpayers were asked what they thought about the use of certain kinds of administrative records in the decennial census in order to reduce the cost of the census and the burden on respondents, 70 percent favored the use of Social Security information on date of birth and sex, and 61 percent favored the use of IRS information on place of residence and income. Data from the 1990 and earlier taxpayer opinion surveys should be used with caution, for several reasons.
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From page 85... ...
How well do they understand informed consent and notification statements, and how are their decisions on survey participation influenced by different formats and modes of presentation? What kinds of information about themselves do they consider to be most sensitive?
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From page 86... ...
The Census Bureau discussed the application of statistical disclosure limitation techniques {see discussion of these techniques in Chapter 6i to small-area tabulations from the 1990 census with representatives of several organizations, including the American Civil Liberties Union tACLUl, to determine their views, as data users and privacy advocates. In the discussions, the ACLU representatives had to balance their privacy concerns against their interest in ensuring that minority groups receive proper voting representation.
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From page 87... ...
In addition to survey respondents and survey takers, the intended audience for the brochure includes "the public, the media, and Congress.'' The committee obtained funcling from four statistical agencies to print and distribute a large number of the brochures. An example of unfavorable publicity requiring a response or clarification of the Census Bureau's confidentiality policies is provided by the announcement, early in 1990, by the Lotus Development Corporation and Equifax of plans to market a CD-ROM product called Lotus Marketplace: Households.
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From page 88... ...
Recommendation 3.5 Federal statistical agencies should continue to develop systematic informational activities designed to inform the public of their ability to maintain the confidentiality of individually identifiable information, including use of legal barriers to disclosure and physical security procedures, and their intentions to minimize intrusions on privacy and the time and effort required to respond to statistical inquiries. Recommendation 3.6 Agencies should be prepared to deal quickly and candidly with instances of "moral outrage" that may be directed at statistical programs from time to time as a result of actual or perceived violations of pledges of confidentiality given to data providers by data collectors.
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From page 89... ...
DATA SUBJECTS Recommendation 3.7 As part of the communication process, statistical agencies should work more closely with appropriate advocacy groups, such as those concerned with civil liberties and those that represent the rights of disadvantaged segments of the population, and with specialists on ethical issues and human rights. 89 Some agencies may want to include members of such groups on their advisory committees.
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