Communications of the ACM

pensation to Lacks’ descendants, but the question of who benefits is now open. This area of law and policy is not settled, but the definition of human welfare is expanding.

Information technology is important for human welfare. Connecting computing research to human welfare raises important ethical issues that go beyond avoiding direct physical harm to research subjects. The regulations already include “ behavior.” Next steps might be finances and reputation (the latter has already arisen in Europe5). The regulatory reach of IRBs can grow: a few alterations in legislation or regulations can require funding agencies to demand that researchers seek IRB review or satisfy other requirements before their proposals will be considered. While regulatory reach can increase or diminish, computing researchers should get in front of the trends. The simple plea of “Trust Us” does not work. The reputations of the many researchers who know right from wrong and can make good human welfare decisions with no review can be damaged by a few who do the wrong thing and get caught. Arguments to leave researchers alone usually lose. Being proactive is smart.

Two examples illustrate contemporary ethical dilemmas involving computing research and human welfare. One is how research done in the digital world should be treated. Research done using Twitter might be like and unlike research done in the past. If new rules apply, who makes such rules? Many IRBs are grappling with this. Another is “cyberoffense,” mimicking those who unlawfully hack into computer systems. 7 Such work might be needed to better secure computing systems against real threats, but what tests should be done, by whom, under whose authority, and for what purposes? Researchers do not become serial murderers to better understand how serial murderers behave. How is this different? How far should efforts to mimic unlawful hackers go? How should the knowledge be used? What if students become expert and unlawful hackers themselves? Such questions need attention. There are no simple answers. Computing researchers can help.

that will help. For others it suggests a way to get out in front.

The point of view is to recognize the sound justification for the role of the IRB and the power of public opinion behind it. IRBs are the product of evolving political will regarding humane treatment of research subjects. The Nuremberg Trials gathered much public interest following WWII, and put the topic on the table. 6 Protocols evolved as public concern grew. The disclosure of the U.S. Public Health Service’s Tuskegee Syphilis Experiment between the early 1930s and the early 1970s caused public alarm, and led to the U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. In 1978 the commission issued “The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research.” This was soon followed by the U.S. Federal Policy for the Protection of Human Subjects (the “ Common Rule”), the creation of the Office of Human Research Protections (OHRP) within the Department of Health, Education and Welfare (now Health and Human Services), and the establishment of IRBs to approve, monitor, and review research involving humans. 2, 4, 10

Between the Tuskegee Syphilis Experiment and the Belmont Report the focus on human welfare expanded. Psychologist Stanley Milgram’s experiments at Yale University in the early 1960s caused public alarm when authority figures ordered subjects to shock others electrically. No one was actually shocked, but subjects believed they had harmed others. Similarly, the public was concerned about psychologist Philip Zimbardo’s experiments at Stanford University in the early 1970s in which students acting as guards in a mock prison psychologically tortured student prisoners. The Belmont Report included mental welfare of research subjects, and IRBs followed suit.

The passage of time does not necessarily reduce public concerns. The papers of Dr. John Charles Cutler disclosed that researchers with the U.S.

Public Health Service deliberately in-
fected human subjects in Guatemala
with sexually transmitted diseases in
the 1940s.a President Barack Obama
apologized to the government and
people of Guatemala, and ordered a
thorough investigation. More than
half a century had elapsed since the
research was done. Cutler gave his
papers to the University of Pittsburg
library in 1990s. They remained unex-
amined until 2010 when a researcher
read them and notified library lead-
ers. The records were transferred to
the National Archives and Records
Administration (NARA), which in-
formed President Obama. The events
were controversial even though they
were decades old.

The definition of human welfare has continued to expand. HeLa, an “immortal” human cell line (the cells can be reproduced indefinitely), was taken from Henrietta Lacks, a cervical cancer patient who died in 1951. HeLa became widely used in medical research, including that of Jonas Salk in his efforts to develop the polio vaccine. Rebecca Skloot’s best-selling 2010 book explains that neither Lacks nor her family benefited from HeLa. 9 Permission to use cells in this way was not required of the patient or the family at the time. Yet in 2013, more than 60 years after the cells were taken, Lacks’ descendants reached an agreement with the National Institutes of Health regarding access to HeLa DNA code and acknowledgment in scientific papers. 8 The agreement did not award financial com- a The Cutler Papers were released online in March 2011: http://www.archives.gov/press/ press-releases/2011/ nr11-94.html.