Comment / Commentaire

B E H A V I O U R A L S C I E N C E R E S E A R C H

A N D T H E R I G H T S O F H U M A N S U B J E C T S *

T H O M A S L. M C P H A I L / Carleton University

L'examen de la question des libertks civiles des sujets expkrimentaux humains est placC dans le cadre de l'accroissement de l'analyse au moyen dordinateurs et I'augmentation des banques de donnCes recouvrables. Les chercheurs doivent se justifier devant un public de plus en plus grand. Une prkoccupation se manifeste en particulier pour les implications cumulatives de I'accumulation de donnkes et pour les questions impliquCes quant B la distribution du pouvoir. Des exemples de difficult& de plus en plus skrieuses B obtenir la collaboration de sujets humains expkrimentaux sont fournies comme base d'une plus grande prkoccupation con- cernant toute la question des ordinateurs, de la vie privke et de la recherche dans les sciences du comportement. Une skrie de mesures approprikes sont recom- mendkes.

The issue of the civil liberties of human experimental subjects is examined in the light of the growth of computer analysis and retrievable storage of data. Research- ers are becoming accountable to an increasing audience. Particular concern is demonstrated for both the cumulative implications of data-gathering and the underlying power-distribution issues involved. Examples of increasing difficulty in obtaining cooperation from human experimental subjects, whether in the laboratory or the field, are cited as a base for greater concern surrounding the entire issue of computers, privacy, and behavioural science research. A series of recommendations for appropriate action are reported.

Revised ethical guidelines are needed for both professionals and students in sociology and anthropology. These guidelines should take into account first the growing concern, expressed by politicians and minority-group spokesmen among others, for the rights of subjects in human experiments; second, the rapid growth since 1965 in the numbers of professionals and students gathering data; and, third, the improvements in permanent storage and rapid retrieval of data brought about by the computer.

There a re growing numbers of researchers and research projects using the technical advantages of the computer, particularly with the lower costs that accompany time-sharing and mini-computers, and this has brought the issue of the rights of human subjects to the surface for some behavioural scientists. In addition, there has been a dramatic improvement in the per- manency of storage and ease of retrieval as hard-copy data is transferred

::. This is a condensed version of a report prepared for the Federal Privacy and 255 Computers Task Force (1972).

Rev. canad. SOC. & AnthJCanad. Rev. SOC. & Anth. l l ( 3 ) 1974

from an original questionnaire to magnetic tape or some other type of plastic cartridge, microfilm, or microfiche.

Computers permit the rapid analysis of large samples which would be virtually impossible to handle by traditional manual techniques; in addition, cross-tabulations may be performed by a computer with both speed and ease, again an almost impossible task using pencil-and-paper procedures. Current research using the latest in statistical models, such as multivariate designs, in many cases has to use large sample sizes in order to meet the various assumptions underlying the models. The combination of these factors has resulted in a quantum shift in research methods, storage and volume of data, and skill of those performing research.

C O N C E R N A N D L A R G E R ISSUES

Concern about data collection and data storage with respect to privacy and individual identifiable information is a subset of a larger issue. As was pointed out during a panel on privacy and behavioural research:

In recent years there has been growing threats to the privacy of individuals. Wiretapping, electronic eavesdropping, the use of personality tests in employ- ment, the use of the lie detector in security or criminal investigations, and the detailed scrutiny of the private lives of people receiving public welfare funds all involve invasions of privacy. Although the social purpose is usually clear, the impact on the persons involved may be damaging. Our society has become more and more sensitive to the need to avoid such damage (1967:535).

This concern is reflected in the more recent “Interim Report of the Com- mittee on Privacy and Confidentiality in the American Federal Statistical System” :

No member of American Society today can assume, offhand, that he is not being followed; that every conversation whether face-to-face or by telephone, is not being monitored; that his past actions, his scholastic record, his performance on earlier jobs, his opinions on long-forgotten political and civic issues, how much he has earned and how he has spent his income, how he has discharged his debts and the ailments he has suffered from, are not in files whose very existence he may be ignorant of, and are not being passed back and forth among persons he has never heard of ( 197 1 : 1 ) .

Privacy, of course, is not an absolute but an issue of cultural relativity (Kira, 1967) ; furthermore, the formal rules affecting privacy (Simmel, 1914; Lindesmith and Strauss, 1956), as well as the informal rules (Goffman, 1958, 1961, 1969), vary within and across social systems. However, this paper addresses itself to the present situation in Canada regarding the pos- sible impact of behavioural science research on privacy. Since the concept and the definition of privacy are dealt with elsewhere in detail,’ only a few background points of an illustrative nature will be made.

1 In fact, I tend to take a different approach than that taken by many scholars attempt- ing to define or classify the origins and roots of “a need for privacy.” One of the most widely read authorities in the field of privacy, Alan F. Westin, states that I‘.., man’s need for privacy may well be rooted in his animal origins, and that men and

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One’s private self may be looked upon as that part of oneself that one is unwilling to expose in a social relationship. It is usually lost through partici- pating in a subordinate dyadic relationship (such as census taker, medical practitioner, student, and employer) , or through promise of confidentiality by, for example, lawyers, clergymen, or intimate associates. To lead a com- pletely private life, such as the life of a hermit or recluse, is not the ideal for most people, but neither is the concept of a totally disclosed person, who has absolutely no privacy. Rather, the concept of man as a social animal contains sufficient rewards that one will give part, but only part, of oneself in order to enjoy interaction with others.

In Canada the problem of privacy and research is becoming an open issue. Presently, considerable controversy is being generated in British Columbia where anthropologists are taking a serious look at the role they play with respect to the subjects of their studies. In other parts of Canada, antliro- pologists and sociologists alike are re-examining the issue concerning the gathering of data from Eskimos and Indians, particularly in the north. In fact, a group of Eskimos on Baffin Island are trying to organize themselves so that researchers have to pay a fee before being permitted access to subjects. In Quebec, sociologists and political scientists are evaluating the uses to which their data is likely to be put, In 1970 at McGiH University, a sociology professor’s class was interrupted by students claiming that he was conducting counter-insurgency research since he was using a federal grant to study separatism. To some extent, the rise of minority and ethnic groups has forced social scientists to reconsider the design of their research and the type of questions that will be asked in terms of the sensitivity of the social environ- ment. In addition, the gathering of data on underprivileged groups, whether they be workers, welfare recipients, or members of custodial institutions, is becoming a sensitive question especially since individuals fail to see signs of reform coming about.

At the 197 1 Canadian Sociological Conference at Memorial University in Newfoundland, 15 people attended the panel session on privacy and the computer. This was the first time that such a session was organized. One comment made at the session that reflects concern whenever the issue is raised is that there is some latent fear that an attempt from outside or inside professional associations to impose regulations on teaching and research in the social sciences will violate the long cherished concept of academic free- dom. Fear that sensitive, unusual, or imaginative research proposals would fail to make it past an ethics review board was raised as a legitimate problem at the morning session during informal conversation.

animals share several basic mechanisms for claiming privacy among their own fellows” Privacy und Freedom, ( 1 9 7 0 s ) . I tend not to look at man’s inherent need for privacy as stemming from instinct or animal origins; rather I follow a learning theory approach. Man acquiries or learns concepts related to privacy as a part of his ongoing socialization process. Privacy is essentially a learned, shared, and cul- tural behaviour. However the relevant attitudinal-behavioural pattern is learned, the basic point remains the same - humans through culturalization and socialization learn how to perceive and to behave in privacy-oriented activities and situations.

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P R O B L E M A R E A S

In one area there has been a significant change in availability of data; this is in the massive growth of data collection by governments, both provincial and federaI. In one western province studies of gerontology were historically limited to homes for the elderly. But with the introduction of compulsory, government-sponsored medical insurance, the provincial authorities allowed researchers access to data on age, sex, income, occupation, health, and geo- graphic location. The point here is not that such research is wrong, because in fact it may have useful implications for policy, but that people were com- pelled to provide information for health insurance coverage and that infor- mation was used for purposes other than that for which it was initially gathered. In another case, in a rural Quebec town, a researcher approaching a householder for an interview was told that he would have to wait since there was already another person interviewing the homeowner about a differ- ent project - and both surveys were being sponsored by federal government grants.

A further cause of concern is the rapid expansion of the undergraduate curricula in the social sciences. It is not unusual to find compulsory method- ology courses in many Canadian universities. Students are given a research project which frequently involves the construction and administration of a questionnaire. More often than not the topic selected is of current interest; sex, alcohol, drugs, lifestyles, alienation, cheating, and other sensitive topics are studied frequently. For the most part, these questionnaires are completed with little apprehension by the students or by individuals who are approached by students, particularly if it is explained to subjects that it is merely a project to satisfy course requirements. What does happen in many cases, is that the highly sensitive information is discussed very openly and informally with classmates and friends. This is not the only instance where the question of adequate protection for individually identifiable responses is raised. The original questionnaires, generally after the responses have been transferred to coding sheets, are frequently left for days at a time on open shelves or on open desks for almost anyone to look at. This one threat to privacy in research may be more a result of carelessness and sloppiness than of any deliberate attempt to violate subjects’ rights.

There is no doubt that some researchers need to “invade” privacy to carry out research, although there is some doubt concerning the significant social utility of much of such research. It may be to the individual’s distinct advan- tage to take an in-depth psychological test, if the results are going to assist him in selecting a career that better suits his aptitudes. Voting behaviour cannot be studied in an empirical way without asking a person for which party he votes; economists frequently work with that most sensitive of infor- mation - income; psychologists and sociologists in order to supply both information and advice frequently require extremely sensitive information concerning sexual behaviour and sexual preferences, as did Masters and Johnson (1968).

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In the case of minority groups, it can be of considerable benefit for them to divulge information about education, income, and employment if the data can be used to demonstrate how they as a group are disadvantaged and to identify those areas in which assistance can, and should, be provided. In the case of large units, such as cities, provinces, or a nation, it becomes almost a necessity for planners to have access to exhaustive data, particularly con- cerning fluctuating trends, on a continuing basis in order to provide advice to decision-makers concerning the allocation of scarce resources, whether it be the tax-dollar, or human or mineral resources. This need must be counterbalanced by professional integrity at both the student and profes- sional level, respecting the rights of respondents' need and desire for privacy. Too often, people divulge information without inquiring or realizing that it may be used carelessly or used for a purpose other than that for which it was originally gathered. When one sees a questionnaire appearing .on university letterhead paper, this usually both legitimates and elevates the research exercise, In addition, people are reluctant to refuse to assist students in com- pleting projects.

The basic issue of the need of the individual for privacy must be matched against the need for information by social scientists in order to test hypotheses and theories of human life. The ultimate outcome of social science research should be a better understanding of humans.

A related issue that deserves attention is the question of the impact on the individual of constant data-gathering. We condition students in our school systems, from grade school through high school to university and graduate school, to continually provide information without question - in fact, to refuse could result in non-acceptance.* Students are requested constantly to fill out information forms, whether they be for enrollment purposes, examina- tions, aptitude tests, housing applications, financial assistance, job placement, and so on. When this yearly conditioning is coupled with the research involv- ing questionnaires perpetuated upon the college sophomore, it should come of little surprise that these same individuals upon graduation freely divulge all types of personal, sensitive information whether it be to prospective employers, bonding companies, credit bureaus, real estate firms, insurance firms, or banks, to name only a few.

Given the growth of social sciences and the sophistication in methodology, computerized storage, and processing of data, the various professional socie- ties in Canada should take specific steps towards recognizing the ethical

2 A related issue that may be an indirect index of the invasion-of-privacy concern plus an index of the unwillingness of people to deal with the privacy issue is found in the application forms for graduate schools. Frequently one sees in application forms for graduate studies in sociology and anthropology questions related to moral char- acter of the applicant, references to personal defects, emotional difficulties, as well as other negative character traits. Little concern is taken to state that the information will be destroyed if the person is not accepted, or the level of confidentiality exercised concerning the information if the applicant is accepted. Damaging and recorded value judgments could be made that could later affect a student's career. One would have thought that social science faculties would have discarded these dubious practices before now.

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dimension of the question of the privacy and rights of human subjects. The following represents an attempt to recommend systematic standards to pro- tect the right of privacy, the rights of human subjects, as well as to preserve the freedom of researchers to gather data from human subjects.

C O N C L U S I O N S AND R E C O M M E N D A T I O N S

One could argue that the violation of individual rights today is not a problem (except in isolated cases where some redress may be possible) but that the real problem lies in the potential threat coming with the substantial growth in numbers of social researchers in Canada, plus the more permanent and more accessible storage facilities offered by the computer. Only by proper and active planning can the threat be guarded against. An outright prohibi- tion against collecting data is one way to eliminate the problem; but both individuals and researchers would lose by not having access to information. Yet regard has to be shown for human subjects’ rights. What is needed is proper planning so that the rights of human subjects are protected and recognized formally by anyone obtaining data from them.

The following recommendations present a multi-stage structure to accom- plish this goal: 1 / The interviews or data-gatherers themselves need specific direction con- cerning the implications of the relationship between the individual respondent and the researcher. 2/ The coding phase also represents another point along the operationaliza- tion of research that individually identifiable responses are part of; those doing the coding must also be made aware of the implications of the rights of the subjects. 3/ The storage phase, after the data has been analysed and reported, repre- sents another group of people whose access to information requires aware- ness of the guarantees that were originally stated to the respondents. Some type of time limit or embargo on the data is proper as part of policy pro- cedures. 4/ If any spin-off or secondary research is to be performed on the data, the subjects should have a right to decide whether they wish the information to be used for purposes other than those for which it was originally collected. A recent example of this use without the permission of affected subjects is the survey done by The Canadian Sociology and Anthropology Association (1970) published in part in the Review in 1973.

I / The individual, as a professional, subscribes to a code of ethics that is part of the larger socialization system of which he or she is a part. This point recognizes the integral role of adequate discussion of ethical questions within courses, such as statistics, interviewing, methodology, or survey research. 2/ The institution,which is usually a university but may be a research house, establishes an ethics committee to approve research on human subjects as

The following is a list of specific recommendations:

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well as the possibility of ultimate legal liability when, for example, the univer- sity stationary or letterhead is used as a formal means of obtaining responses. 3/ Where funding agencies such as the Canada Council, National Research Council, various government departments, or royal commissions are involved, they, as part of their research grants approval procedure, must specifically investigate the relationship between the means of data acquisi- tion and the rights of the individual respondents,

In conclusion, when discussing research, computers, and privacy, several themes have to be considered. There is no doubt that research is increasing and the depth to which it may invade a person’s privacy is substantial; yet, there is the realization that research may provide inestimable assistance to both individuals and decision-makers. With computers added to the reper- toire of researchers there is the profound impact of technology to consider. The ability to handle large sample sizes, rapid cross-tabulations, greater permanency of storage, and related characteristics have to be reckoned with. As privacy, or lack of it, becomes a more visible concern one cannot ignore the potential impact of misuse of information originally gathered for statisti- cal purposes. Even if the concern only creates awareness that will lead to a reduction in the sloppiness of handling personally identifiable information, this in itself will make the exercise worthwhile.

R E F E R E N C E S

Goffman, E. 1959 The Presentation of Self in Everyday Life. New York: Anchor Goffman, E. 196 1 Encounters. New York: Bobbs-Merrill. Goffman, E. 1969 Strategic Interaction. Philadelphia: University of Pennsylvania Press. Hall, E.T. 1959 The Silent Language. New York: Fawcett. Hall, E.T. 1969 The Hidden Dimension. New York: Anchor. 1971 “Interim report of President Nixon’s committee on privacy and

confidentiality in the federal statistical system” (mimeographed). Kira, A. I967 The Bathroom. New York: Bantam. Lindesmith, A.R. and Strauss, A.L. 1956 Social Psychology. New York: H. Holt and Company. Masters, W. H. and Johnson, V.E. 1966 Human Sexual Response. Boston: Little, Brown. 1967 “Privacy and behavioral research.” Science ( 3 February) 535. Simmel, G. 1914 “The secret and the secret society.” In K. Wolff (ed.) The Sociology of

Westin, A. 1970 Privacy and Freedom. New York: Atheneum.

Georg Sirnrnel. New York: The Free Press.

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