Situation
Professor Kathleen McGorty conducts research on the re-integration of individuals released from long-term mental health care facilities into communities in the Southwest. Her population has been selected by a team of researchers in the state department of mental health, but during the interviews, she discovers that a substantial number have not been contacted by the department and made aware of the nature of the research or its use. After requesting clarification from the sponsors of the research, he is told that this is not a case requiring consent, as it is for internal state use only.
Questions
- Can a researcher rely on a contract sponsor to determine appropriate safeguards, even if the contracting agent has legal responsibility for the population in question?
- Does state consent “cover” the researcher’s responsibility for informed consent?
- To what extent do research responsibilities extend beyond mere consent? In the case of vulnerable populations, are there additional safeguards to be considered such as, culture and custom, or the protection of particularly vulnerable populations such as the mentally retarded?
Discussion
The issue of informed consent here is particularly complex and not easy to resolve. In the case of vulnerable populations — disabled, severely handicapped and minors, informed consent is a well trod path hinged on very traditional scientific research on human populations. In the case, the informed consent rule of the subject or the subject’s legally authorized representative may be appropriate. Also the consultation with legal authorities to be consistent with state or federal regulations, or an institutional review board may also be appropriate. But informed consent for sociologists rarely falls in the neat pattern of the medical researcher. Instead, exploratory research, investigations of ill defined problems, marginal populations and populations particularly at risk (which includes most illegal immigrants, those whose families or environments may contain informal illegal activities, most minorities, children and youth exposed to gangs, and a variety of lifestyles not included in ordinary research, comprise much of what young investigators are attracted to and undertake. Minority researchers are particularly vulnerable to the issue of “informed consent” rules, as well as rules on vulnerable populations and most of all reporting findings. New rules should be established to protect sources, even at the expense of some communication under scientific rules.
