Data Collection, Ethical Issues in

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DATA COLLECTION, ETHICAL ISSUES IN

Ethics in demographic data collection, or in demographic research more generally, has received little explicit attention in the population field and no formal guidance from the principal professional associations. This is in contrast with the treatment of ethics in anthropology, sociology, statistics, and medical research. Ethical discussions in the population field have focused almost exclusively on the ethical dimensions of population policies and programs.

As a result, available ethical guidance comes primarily from national and international professional associations in allied fields. The major concerns of professional associations are proper behavior among members of the profession and by members of the profession toward others–students, employers and donors of research funds, research subjects or respondents, and the general public or society at large.

Applied to demographic data collection, the most relevant topics are (1) promoting the neutrality and objectivity of the data collection operations and outputs, including issues of professional competence and integrity, and (2) safeguarding the autonomy of research subjects or respondents, including the protection of respondents and the entire study population from potential harm.

Since the official statistics generated by governmental sources, such as population censuses or birth and death registration systems, are a major source of demographic data, national and international norms relating to official statistics are also a relevant source of ethical guidance. However, these norms are primarily directed toward the behavior of governments and institutions rather than the actions of individual practitioners.

Professional and Scientific Integrity

The code of ethics of the American Sociological Association advises sociologists to "adhere to the highest possible technical standards that are reasonable and responsible in their research…act with honesty and integrity; and avoid untrue, deceptive, or undocumented statements…and avoid conflicts of interest and the appearance of conflict." The United Nations Fundamental Principles of Official Statistics, the International Statistical Institute's Declaration on Professional Ethics, and the American Statistical Association's Ethical Guidelines for Statistical Practice provide similar guidance.

Protecting Respondents and Other Research Subjects

Norms relating to confidentiality and the protection of human research subjects include the succinct statement in the Fundamental Principles of Official Statistics: "individual data collected by statistical agencies for statistical compilation…are to be strictly confidential and used exclusively for statistical purposes." The Code of Ethics of the American Sociological Association states that sociologists "have an obligation to ensure that confidential information is protected" so as to shield sensitive information obtained in research. Sociologists are also to "inform themselves fully about all laws and rules which may limit or alter guarantees of confidentiality. They determine their ability to guarantee absolute confidentiality and, as appropriate, inform research participants… of any limitations to this guarantee at the outset." The International Statistical Institute's Declaration on Professional Ethics and the American Statistical Association's Ethical Guidelines for Statistical Practice set out similar ethical obligations.

Also of relevance are the requirements that governments and other funding agencies impose on their grantees. Laws and other regulatory efforts are often designed to achieve many of the same ends as ethical norms; however, they are distinct approaches to misconduct and, in specific instances, they may be at variance with one another. Accordingly, researchers need to be aware of both the ethical and legal constraints relevant to their planned research and data collection efforts.

Current norms and regulations designed to protect human research subjects were initially developed as a reaction to the Nazi medical experiments carried out on concentration camp inmates during World War II. Over the years, by simple extension, the area of concern has broadened to include both

TABLE 1

experimental and non-experimental threats and has been adopted, without substantial modification, by social science researchers more generally. Thus, the related protections focus on safeguarding against invasive acts on the body or mind of the research subject, particularly through biomedical and psychological experiments, that threaten the physical or mental well-being of that subject. A key element of such protections is the general requirement that the voluntary, informed consent of each individual research subject must be obtained before any research is begun.

Besides the areas of experimental psychology and the work of some cultural anthropologists, virtually all demographic and related social science research and data gathering is minimally intrusive in terms of the original biomedical model and its extensions. Certainly the primary purpose and mode of the bulk of such data collection is simply the gathering of minimally sensitive information with the intent of characterizing populations rather than any individual respondent. Indeed, under the traditional informed consent paradigm many demographic data collection activities would be categorized as "minimally invasive." However, the need to protect respondents from harm arising from the information they provide imposes a responsibility on researchers to keep such information confidential. The inclusion of more sensitive health information and various biomarkers and anthropometric data (such as HIV status) in some demographic surveys calls for a higher level of respondent protection.

Under certain circumstances, information itself may pose real risks to human research subjects and their families, or to other members of the group to which these respondents belong. For example, as William Seltzer and Margo Anderson demonstrated, information on individuals and their group membership obtained through population registration and other routine data collection activities has been associated with major human rights abuses including genocide, forced migration, and internment. Historically, the risks have had particularly serious consequences for those in small, politically weak groups or in groups that were otherwise the object of attack. In the case of DNA testing, the risks lie primarily in the sensitivity of information obtained rather than in the degree of invasiveness of the procedure, and that those potentially at risk are not only the individual research subjects but also others with similar genetic characteristics.

The degree of risk associated with any demographic data collection effort or program is a function of many factors, including: the method of data collection, study design, the population being studied, the variables employed, and the level and methods of analysis. Table 1 summarizes those factors that seem to have contributed to elevated risks of misuse in the past.

As important as ethical considerations may be in promoting responsible demographic data collection, other kinds of safeguards can also play a role in protecting against possible misuse. These include substantive safeguards, methodological and technological safeguards, organizational and operational safeguards, and legal safeguards. Indeed, the use of multiple safeguards is perhaps the best defense against the misuse of demographic data and population data systems, and one goal of ethical awareness is to ensure that adequate attention has been devoted to these other safeguards.

Ethical norms also help temper the zeal of those promoting and implementing action and research programs and related demographic data gathering activities. These advocates or researchers are often so convinced of the importance and beneficence of research and data gathering that the resulting risks to others are minimized or ignored. Indeed, some of the most serious ethical lapses in research can be attributed to a lack of awareness that the particular activity presented any ethical issue at all.

See also: Anthropometry; Census; Population Registers.

bibliography

Annas, George J., and Grodin, Michael eds. (1992) The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation. New York: Oxford University Press.

Kultgen, John. 1988. Ethics and Professionalism. Philadelphia: University of Pennsylvania Press.

Murphy, Timothy F. and Marc A. Lappe, eds. 1994. Justice and the Human Genome Project. Berkeley: University of California Press.

Reich, Warren T., ed. 1995. Encyclopedia of Bioethics, revised edition. New York: Macmillan-Simon.

Seltzer, William and Margo Anderson. 2001. "The Dark Side of Numbers: The Role of Population Data Systems in Human Rights Abuses." Social Research 68: 2 (Summer): 481–513.

Vanderpool, Harold Y., ed. 1996. The Ethics of Research Involving Human Subjects: Facing the 21st Century. Frederick, MD: University Publishing Group.