Group Harms: Research with Culturally or Medically Vulnerable Groups

 

Content Author

 

Helen McGough, MA

The University of Washington

 

Introduction

Sometimes researchers involve people in their research who do not belong to a federally protected group (i.e., prisoners, pregnant women, fetuses, or children), but who are nevertheless vulnerable to harms from participating in research. In some cases, the harms may fall, not necessarily on the subjects of the research, but on the group as a whole, including those who did not take part in the research itself. The purpose of this section is to provide examples of situations in which groups of people may be harmed and to describe some things researchers can do to reduce their risks of harm.

 

By the end of this module you will be able to:

•Describe some distinct groups or communities of people who are vulnerable.

•Identify examples of research that have harmed groups.

•Identify strategies that researchers can take to reduce the risk of group harms.

 

What do we mean by "groups" or "communities?"

In this module we use the terms "groups" and "communities" in a variety of ways. Sometimes people are members of ethnic or racial groups (such as, African-American, Hispanic, or Bantu), religious groups (such as, Islamic, Taoist, or Christian Scientist), or groups described by geographic location (such as, New Yorker, Parisian, or New Zealander), by occupation (such as, agricultural worker, physician, or teacher), or by physical condition (such as, diabetic, sight-impaired, or cancer patient). One person may belong to more than one of such groups. People may choose to describe themselves as members of groups, or may be assigned membership into these groups by others.

 

What do we mean by vulnerability?

Because of their special position in society, some groups may be at increased risk of suffering harm that may result if individual members of the group take part in research. Generally, these groups include those that have suffered and continue to suffer discrimination (such as African-Americans, American Indians, and Alaska Natives), those who may have less access to education, social services, and health care (such as groups with low socio-economic status), and those who may be behaviorally or politically stigmatized (such as commercial sex workers, injection drug users, or members of religious cults). Although members of the group may be harmed as a result of taking part in research, group harms result when many or all of the group members are harmed, including those who did not consent to being research subjects.

 

Such harms may include stigmatization, loss of status, genetic determinism, and violation of cultural or group norms and values.

 

Examples of how research has harmed groups in the past

Although some studies that have resulted in harms to groups were poorly designed, even well-designed studies can have consequences for members of specific groups that could have been avoided. What follows are examples of studies that have had negative impacts on groups of people who were not necessarily study subjects:

 

•Publication of results of research conducted in Ashkenazi Jewish families contributed to the misperception that Jews are more prone to genetic defects and diseases. There was concern in the Ashkenazi Jewish community that this information would lead to health and life insurance discrimination, even for those who did not undergo genetic testing (Phillips KA, Warner E, Meschino WS, Hunter J, Abdolell M, Glendon G, Andrulis IL, Goodwin PJ., "Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2," Clin Genet. 2000 May;57(5):376-83).

•Publication of the results from a study of alcoholism among Alaska Native residents of Barrow, Alaska contributed to stigmatization of this group of Alaska natives (Klausner, S. and Foulks, E. (1982). Eskimo Capitalists: Oil, alcohol and social change. Montclair, NJ: Allenheld and Osmun). This is an example of a situation in which groups were stigmatized and the economic situation of a city suffered because of conclusions drawn from a research study.

•Various studies purporting to study the intelligence of various racial groups (Herrnstein, R.J. and Murray, C. (1994). The Bell Curve: Intelligence and Class Structure in American Life, A Free Press Paperbacks Book) have resulted in stigmatization of these groups. Many of these studies were poorly designed and resulted in inappropriate characterizations of members of racial groups.

 

What steps can researchers take to minimize these risks of group harms?

There are several actions that researchers can take to reduce the risks of group harms.

 

•Community consultation: Researchers should work with the community of interest to make sure that potential harms are recognized and understood, and that the study is designed to provide benefits to the community.

•Collaborative IRB review: Some groups (such as tribes, retirement communities, and school districts) have their own ethical review process for research. Researchers should work with the local ethics review body to make sure that the group's approval is obtained.

•Plan on-going consultation: Researchers should work with the group to make sure that group leaders are provided with accurate information about the research as it progresses and changes. Researchers must anticipate that their research may have to change or even stop in order to minimize potential harms.

•Plan disclosure of research results ahead of time: Most group harms result from inappropriate disclosure of research results. Working with the group so that the members are informed about how the research results will be disclosed and what the implications of disclosure may be will reduce the possibility of harms resulting to the group as the research is published or presented.

 

Researchers must evaluate whether or not their research could result in group harms and, if this is a possibility, take appropriate steps to minimize this risk.