Records, Computers and the Rights of Citizens. The Need to Protect Data Subjects from Injury


Even at the Federal level there are few statutes that protect personal data in statistical-reporting and research files from unintended administrative or investigative uses. The Census Act, the Public Health Service Act, and the Social Security Act are notable exceptions. Otherwise there is little to prevent anyone with enough time, money, and perseverance (to say nothing of someone who can issue or obtain a subpoena) from gaining access to a wealth of information about identifiable participants in surveys and experiments. This should not, and need not, be the case.Social scientists and others whose research involves human subjects are vocal about the importance of being able to assure individuals that information they provide for statistical reporting and research will be held in strictest confidence and used only in ways that will not result in harm to them as individuals. Unless people get-and believe-such assurances, they will inevitably become either less willing or less reliable participants in surveys and experiments.6 Ideally, data subjects should also be told of the conditions under which they are being asked to provide information, and should be given an opportunity to refuse if they find those conditions unsatisfactory. It is often asserted, for example, that the decennial census (in which response is mandatory) is a feasible undertaking only because the public willingly co-operates, and that the public's cooperation is best obtained by explaining to respondents the uses to which the data will be put.

We believe the principle that no harm must come to an individual as a consequence of participating in a general knowledge-producing activity should be regarded as the essence of "use for statistical or research purposes only." Individual data subjects asked to provide data for statistical reporting and research should also be fully informed, in advance, of the known consequences for them of providing or not providing data. Survey respondents and participants in experiments and demonstration projects are largely dependent on what they are told by interviewers or by explanatory notes on forms. Hence, it is incumbent on the institution conducting or funding a statistical-reporting or research project to find out how vulnerable the data in its files are, and so to inform its data subjects.

Finally, we believe that the best way to assure that individual data subjects will not be harmed is to extend to all personal data generated through statistical-reporting and research activities the statutory protections that have been given to census data and certain classes of health and economic data collected and used in the public interest.