Am I My Brother's Keeper?: A case study of the responsibilities of research

Human Organization, Winter 2000 by Singer, Merrill, Huertas, Elsa, Scott, Glenn

As a result of the AIDS epidemic, there has been considerable expansion in research targeted at inner-city drug-using populations. Anthropology has played an important role in the effort to better understand HIV risk behaviors among drug users and to develop empirically grounded interventions. However, the study of highly vulnerable and social stigmatized populations raises important ethical issues, including the full extent of researcher responsibility to the subjects of research. This paper uses a case study approach to explore these issues. The case in question is a research participant who was killed by police in what they describe as a "police-assisted suicide" not long after his last interaction with research staff. The paper seeks to initiate discussion among researchers, funders, providers, and policy makers concerning key ethical and responsibility issues in HIV/AIDS research.

Key words: research ethics, researcher responsibility, HIV/AIDS, drug users, vulnerable populations

The death of a street drug user rarely draws much public attention. In addition to drug overdose, violence victimization, exposure to the elements, and automobile accidents, a range of infectious diseases, including HIV, regularly claim the lives of illicit drug users without drawing widespread notice. Occasionally, because of the dramatic nature of the way a drug user dies, this pattern is violated. Such was the case in the death of Tony Lando (pseudonym), a 26-year-old drug user of mixed Puerto Rican and Italian heritage, who was sought by the police because he allegedly burglarized his parent's home, presumably to support his addiction. He also was wanted for criminal mischief and failure to appear in court on an earlier charge.

Early in April 1999, the police, directed to his whereabouts by a call from a concerned family member, arrived at Tony's apartment reportedly intent on serving an arrest warrant. When no one responded to their knocks on the door of the apartment where Tony was said to be living, the police persuaded the building superintendent to let them in. After a brief search, they found Tony inside, waving a knife with an 18-inch blade. The officers reported that they instructed Tony to drop the knife, but he adamantly refused. Then, they claimed, he suddenly lunged at them with the knife. Two officers rapidly fired eight rounds. Tony was hit several times and slumped to the floor. He died instantly.

Questioned by newspaper reporters, a number of police officers indicated that Tony's actions suggested a "suicideby-police" scenario. In such instances, a highly distraught individual aggressively engages in threatening behavior to provoke the police into killing him. The police supported this interpretation of the events in Tony's apartment by citing an incident three months earlier. On that occasion, the police had been called to the same apartment by a bounty hunter who was trying to capture Tony, wanted at the time for jumping bail on an earlier arrest. During this prior incident, Tony is said to have held a knife to his own throat and vowed he would not submit to arrest. He finally changed his mind, however, and was taken into custody. All of this information was reported in a newspaper article on Tony's death, according him greater individual public notice than most impoverished street drug users usually receive.

Tony's obscurity was further diminished by the fact that, in addition to being a wayward son, a known drug user with a long rap sheet, and an otherwise unemployed self-admitted petty drug dealer, he was also a very dependable participant in a longitudinal study of HIV risk among street drug users. Over the course of three years, from February 2, 1996, until his death, Tony was interviewed by members of our research team on three occasions concerning his sociodemographic characteristics, drug use patterns, HIV risk behaviors, health and mental health status, personality characteristics, and related matters. He also was provided with various intervention services. His last interview occurred about a month and a half before his death.

How Tony died and the young age at which his life ended were shocking to our research team, but the death of a participant in this project, which involves almost 1,300 individuals at high risk for drug overdose, HIV and other infections, and violence, is not a rare event. Since the project began in 1993, approximately 3 percent of study participants-most of whom were in their 30s and 40shave died of various causes. This mortality rate, which is 4.6 times higher than that of the 35-44 age group in Hartford, Connecticut (Polednak 1998), suggests the level of vulnerability of the study population. Nonetheless, the possibility that our research might have played a specific role in averting Tony's death-for example, by spotting that he was suicidal-raises significant questions about the proactive intervention services incorporated into basic research projects with heavy drug-using populations, groups that are known to suffer from high rates of mental health problems and to be significantly involved (as perpetrators and victims) in violence. These issues will be examined using Tony's case, as well as other data from our studies with street drug users over the last 10 years.