Applied Ethics

The complex and nuanced contexts around the Libby disaster called for careful consider­ation of ethical implications in conducting this research. Avoiding doing harm called on the researchers to manage numerous ethical ten­sions, many of which were not clearly delin­eated at the outset of the investigation.

Multiple Senses of First Do No Harm. The first and primary lesson in applied ethics in the Libby research case comes directly from medical ethics: First do no harm. Researchers often assume that research is driven by lofty ideals and thus is an inherently ethical enter­prise because knowledge gained outweighs risks. Although that assumption has long been challenged in the social sciences (e.g., in part because of the Milgram studies, 1974), it remains common today. For example, many professionals who conduct health education and communication campaigns assume that “any intervention is better than no inter­vention” (see, as an exception, Guttman, 2011, who considers the inadvertent adverse effects of public health communication inter­ventions). The recognition that the research process itself can be harmful, that interven­tion research can make things worse rather than better, guided the Cline research team’s approach in Libby. Because their engagement with the community enlightened them on the complex dynamics—political and economic fallout, lawsuits, and conflict—they under­stood that it was possible to do harm not only to individual research participants but also to the community at large. Moreover, protecting their research partner was critical. CARD rep­resented the singular community health care asset devoted to ARD and a “safe place” for people whose health had been jeopardized by the disaster.

Protecting the Community. The recognition of the ease with which the research team could unwittingly do harm was one reason for the weeklong visit to Libby prior to data collec­tion.

Listening carefully in every situation is important. For the Libby study, this included the pre-research visit, listening to research participants carefully and compassionately regardless of their point of view, and, as the researchers discovered, listening to the com­munity at all times and places while in Libby. These conversations shed light on a bruised community’s wariness around the disaster (e.g., a restaurant server who asked if the project was a “good” one: “is it good for us”). They clarified the nature of Libby residents that was characterized by one focus group member as “everybody’s just looking you right in the eyes, standin’ tall and speaking and talking” (e.g., at a craft fair, when research­ers, paying with out-of-state checks, asked vendors if they wanted to see a driver’s license, the prototypic response was “Why would I want to do that?”). In short, the researchers experienced how easily individuals and the community at large could be taken advantage of due to their characteristic honesty and trust in the honesty of others.

Protecting Research Participants. Research planning included numerous efforts to protect the identities and welfare of research par­ticipants. The need for concerted protection efforts came not from the potential for people with ARD being stigmatized (the research team did not know about that dynamic in advance), but from the fact that numerous people with ARD and their family members had consulted lawyers, and some were in the process of tak­ing legal action against the company. Because the W. R. Grace company lawyers were in town, and staying at the same motel where the team was lodged and where data collection occurred, additional care was taken to protect the data collection process.

In addition to protecting participants’ identities and comments, the research team actively sought to protect them psychosocially during the focus group and interview pro­cesses by employing a skilled clinical social worker to moderate the groups, structuring discussions to end on a positive note, and pro­viding participants with contact information for the CARD social worker in the event that they later became emotionally distraught due to the discussion.

Participants’ identities also needed to be protected during researchers’ subsequent visits to Libby. On a later visit, Cline instructed an accompanying team member not to approach or acknowledge any research participants in public settings, unless the participants initiated social contact. Based on data analyses, Cline understood the stigmatizing responses to peo­ple with ARD and their potential for social and psychological damage. Simply having a conver­sation in a public place with a participant could disclose that person’s research participation and possibly the individual’s disease status. (The concern turned out to be well founded as the team encountered a participant in a local coffee shop during their first meeting.) A few research participants also attended public meetings during which initial results were reported. In those, Cline routinely explained to audiences that the researchers did not approach participants who they might encounter in order to protect the participants’ privacy.

Protecting the Research Partner. Although CARD itself was at the center of some con­flict, it was viewed as a safe haven for people with ARD. The clinic was under siege by W. R. Grace as preparation for a criminal trial was occurring. During the first week of data collection, attorneys for W. R. Grace were in town, staying in the same motel, eating at the same restaurants, and were present in the clinic’s conference room—due to a court order that allowed W.

Several steps were taken to protect the integrity and credibility of the investigation’s results. Cline determined that the data col­lection process and the credibility of the data needed to be able to endure skeptical scru­tiny (e.g., the type that might occur if results became part of a legal process). For example, the design of the study sought to gain the full range of stakeholder positions in the com­munity. Moreover, the discussion guide was designed to elicit the full range of responses to the disaster. Care was taken to avoid ask­ing leading and loaded questions. In addition, the moderator was provided only skeletal background information about the disaster so that she was not in the position to be able to “lead” participants to particular conclusions.