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.
The Facebook story
suggests computing
researchers should
consider possible
connections between
their research and
human welfare.