The above sections have hastily sketched some of the major areas of concern that are "timely," in the sense that they are in tune with the con- cerns of Congress in setting up the Commission, and also represent to a con- siderable degree an emerging consensus among the quantitative social
scientists engaged in program evaluation and social indicator development.
(Section 3, Informed Consent, as it affects opinion surveys may have gone beyond this consensus.)
This present consensus, however, may be seen as but the current form of a growing shift in public consciousness about the rights-of-subjects as a part of an increasingly equalitarian participatory democracy. It may help the Commission to consider what the parallel set of demands 10 years hence might also contain. The following three topics are included for this purpose.
Respondents' Interests in the Topics on Which Data are Collected. A recent trend in criticism of research on social problems, including evaluation research, goes under the name "blaming the victim" (Ryan, 1971; Caplan &
Nelson, 1973). There is a recurrent option in program evaluation and social indicator research as to whether evidence of a social problem is indexed as an attribute of the individual or as an attribute of the social setting and the social institutions present. When the data are indexed as individual attributes
(ability, morale, personality, employment status) this predisposes the analysis to end up "blaming the victims" of social system malfunction for their lot in life. Many times there are options in the wordings of questions that can make big differences in the social causation implied even while collecting very near- ly the same data. Standards could be developed requiring that articulate spokes- men of the program recipient population be asked to check on the research instru- ments in this regard. Or more specific recommendations could be developed, such as recommending the social setting attributional format wherever the option existed. Shifts of this kind might be of practical value as well.
ghetto settings, opinion surveys meet with mass boycott, greatly hampering the evaluation of new alternatives in social welfare services delivery. In most such instances, the program evaluation purposes would be served just as well by substituting "is this service effective" questions for the "are you sick"
questions.
on the quality of welfare services delivered rather than a source of evidence about his own inadequacies. This shift, plus one on rights to the results be- low, will almost certainly increase the cooperation received, and turn the in- formational survey into a useful vehicle for communicating neighborhood com- plaints to government. We have not developed a recommendation in this area, and the reactions of our panel of readers of the earlier draft (See the Appendix, points 21 and 22) shows that no consensus exists to support such a recommendation.
Note that the "blaming the victim" theme is only one illustration of such In many urban
The conceptual shift is to turn the welfare recipient into an expert
respondents' interests. The more general class is discussed in the next section.
Class or Category, Privacy, Interests, and Rights. This paper and the National Commissions' activities as a whole have assumed that the rights-of- subjects are individual rights. Jeopardy to the rights of a class or category to which the subject belongs have not been considered. Most discuss ions of rights-of-subjects join us on this. Class rights are a Pandora's box that, if given recognition, would totally preclude most social science research. The present writers recommend that we continue to refrain from recognizing such rights in research ethics but that we make this decision self-consciously, with some recognition of the issues we are neglecting.
Some examples: The American Council on Education from anonymous surveys of college students prepared a profile of the activist campus radical who had been involved in destruction of property and disruption of speeches, etc. No radical respondent was thereby jeopardized for the past acts confessed to, since the data were genuinely anonymous in their initial collection by mailed ballot. But the interests of current and future radicals are jeopardized. For example, college admissions offices seeking to exclude such students, could do so on an actuarial basis by asking applicants the profile questions about back- grounds, interests, activities, and values, and excluding those applicants who fit the profile with a large proportion of the predisposing signs.
a case, the proper protection may be to increase the legal accountability of college admissions procedures by prohibiting the use of anything but academic competence criteria. Rules seeking to preclude such class or category jeopardy in research seem to us unacceptable in their likely coverage.
In such
The statistical analyses by the Bureau of Internal Revenue might show that M.D.'s of certain types have twice the income of other professionals.
This jeopardizes the interests of these M.D.'s by increasing the frequency with which they are approached by fund raisers, confidence men, and burglars,
and by the invidiously focused zeal of internal revenue agents.
and category social statistics seem to us absolutely essential for the govern- ance of a democracy in which past governmental decisions are a major determin- ant of income inequities even in the free market sector of the economy.
Yet such class
Black leaders are justifiably disturbed about social statistics reporting on invidious black-white comparisons in achievement test scores and crime rates.
Perhaps even data on income and rental costs could be regarded as prejudicial.
Yet these data seem essential background evidence on which to base governmental action seeking to remove the traditional environmental disadvantages blacks live under. The Civil Rights movement has had to reverse itself on this within the last 25 years. For example, in 1950 those working on reducing the de facto segregation in the Chicago schools had as their goal color-blind assignment of children to school districts and setting of school district boundaries.
time open or disguised records indicated the race of every child and teacher.
Within ten years, the Chicago school system was stonewalling those pushing for more integration by asserting that they had no way of telling which teachers and Pupils were black. To achieve real integration, racial identification had to be made known and counted by categories.
integration would be impossible without it.
At that
Affirmative action and school
At the present time, the no doubt environmentally produced black-white difference in school achievement tests has been so redundantly documented
and is so regularly misinterpreted as evidence of an innate racial inferiority, that one of us has called for a cessation on all such research unless ac- companied by thorough measurement of the black-white differential in oppor- tunities to learn the specific items the tests employ (Campbell & Frey, 1970).
Considering the problem of class or category rights as a whole, however, we are reluctant to see any such appeal made a compulsory rule.
Respondent Rights to Data Produced.
the future that the participants in research, the interviewees in public opin- ion surveys, etc., are co-producers of the research product, and should be co- owners of that product with an equal right to know the results and to use that information in political arguments and in other ways.
rule that all respondents to an informational survey should be provided with the statistical results produced.
these results placed in the nearest public library to each respondent.
It will increasingly be argued in
This could lead to the Such a rule could be implemented by having Another way of arriving at such a proposal is to recognize that where such surveys are a part of governmental decision-making, the voting booth rather than the animal laboratory becomes the relevant model.
get to know and use the results of elections they have voted in, so too they should know the results of surveys and interviews they have participated in.
This equalitarian emphasis is supported by an analysis that sees researchers as a potentially self-serving elite who may exploit the cooperative efforts of the respondents by producing products that may be used to harm the interests of the respondents.
not usually be meaningful and useful to the respondents, for most social science surveys they would be.
Just as voters
While in medical and physical research, the results might
The present writers would be happy to have this adopted right now as
standard operating procedure for all public opinion polls as well as evaluation research, including private polls now never published. Along with this would
go full information prior to the questioning as to who was paying for each question and how the information would be used.
the descriptive value of opinion surveys, in that answers would be more con- sciously given so as to produce politically desired statistical results.
However, we believe the trends in political conscience are such that in 10 or 20 years we will have to live with these limitations.
received a bare majority of endorsements in our volunteer panel, as reported in the Appendix under Recommendation 24.)
Summary
These rules would decrease
(This proposal
This background paper for the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research asserts that research in program evaluation, social experimentation, social indicator research, survey research, secondary analysis of research data and statistical analysis of data from administrative records are and should be covered by PL93-348 and other rights-of-subjects legislation.
Because this vastly increases the burden on existing Review Boards, and because actual cases of abuse of subjects' rights are essentially nonexistent in this area, a procedure of conditional clearance affidavit is suggested that, at the discretion of the Review Board, might substitute for full review in most cases.
will be needed.
Greater numbers and new types of Rights-of-Subjects Review Boards
Most jeopardies to rights-of-subjects in these areas will come from the information about them that is collected. In the boundary between research and practice, it is recommended that shifts in administrative policy that are normally within an administrator's discretion not be regarded as research, but that novel data collection procedures designed to evaluate such changes be classified as research and subject to Review Board scrutiny.
Extending the right of informed consent into these areas, especially survey research and other information gathering activities, will require major procedural changes that will seem to threaten the validity of results.
This extension is nonetheless recommended. Informing respondents of the risks of verificational interviews and of subpoena of information is recommended where these risks exist.
It is recommended that reanalysis of research data and statistical
analyses of administrative records be permitted without respondent permission where no individually identifiable data are transmitted out of the original file of custody.
In future decades, issues of class rights, of respondents' interest in question form to avoid blaming the victim, and of respondents' co-ownership of the research results will have to be faced. While the Commission's atten- tion is called to these areas, no formal recommendations are offered.
References
Boruch, R. F., & Cecil, J. S. Methods for assuring confidentiality of social research data. (In press, Rose Monograph Series, New York: Cambridge University Press, 1977)
Campbell, D. T., Boruch, R. F., Schwartz, R. D., & Steinberg, J.
Confidentiality-preserving modes of access to files and to inter- file exchange for useful statistical analysis.
1(2), 1977, pp. 269-300.
Campbell, D. T., & Frey, P. W.,
fade-out of gains from compensatory education. In J. Hellmuth (Ed.).
Compensatory education: A national debate, Vol. 3, Disadvantaged child.