Download Ethics for Design (Research)

Design Research Ethics
Background
Nuremberg Trials
Freezing / Hypothermia
The freezing / hypothermia experiments were conducted for the Nazi high
command. The experiments were conducted on men to simulate the
conditions the armies suffered on the Eastern Front. The German forces were
ill prepared for the bitter cold. Thousands of German soldiers died of
freezing or were debilitated by cold injuries…
The icy vat method proved to be the fastest way to drop the body
temperature. The selections were made of young healthy Jews or Russians.
They were usually stripped naked and prepared for the experiment. A
insulated probe which measured the drop in the body temperature was
inserted into the rectum. The probe was held in place by a expandable
metal ring which was adjusted to open inside the rectum to hold the probe
firmly in place. The victim was then placed in the vat of cold water and
started to freeze. It was learned that most victims lost consciousness and
died when the body temperature dropped to 25 C.
http://www.remember.org/educate/medexp.htm
Nuremberg Code (1947)
The Nuremberg Code is a set of research ethics principles for human
experimentation set as a result of the Subsequent Nuremberg Trials at the end of
the Second World War.
The ten points
are:
1. The voluntary consent of the human subject is absolutely essential…
2. The experiment should be such as to yield fruitful results for the good of
society…
3. The experiment should be so designed [based on previous research]… that the
anticipated results will justify the performance of the experiment.
4. The experiment should be so conducted as to avoid all unnecessary physical
and mental suffering and injury.
5. … except, perhaps, in those experiments where the experimental physicians also
serve as subjects.
6. Risk… should never exceed … humanitarian importance…
7. Proper preparations should be made and adequate facilities provided to protect the
experimental subject ....
8. The experiment should be conducted only by scientifically qualified persons.
9. The human subject should be at liberty to bring the experiment to an end…
•
The scientist in charge must [also] be prepared to terminate the experiment…
Tuskegee Syphilis Study (1932 - 1972)
The Tuskegee Study of Untreated Syphilis in the Negro Male…
was a clinical study, conducted between 1932 and 1972 in
Tuskegee, Alabama, in which 399 poor — and mostly illiterate —
African American sharecroppers were studied to observe the natural
progression of the disease if left untreated.
… Individuals enrolled in the Tuskegee Syphilis Study did not give
informed consent and were not informed of their diagnosis;
instead they were told they had "bad blood" and could receive free
medical treatment, rides to the clinic, meals and burial insurance in
case of death in return for participating.
…By 1947 penicillin had become the standard treatment for syphilis.
Prior to this discovery, syphilis frequently led to a chronic, painful
and fatal multisystem disease. Rather than treat all syphilitic subjects
with penicillin and close the study, or split off a control group for
testing penicillin; the Tuskegee scientists withheld penicillin and
information about penicillin, purely to continue to study how the
disease spreads and kills. Participants were also prevented from
accessing syphilis treatment programs that were available to other
people in the area. The study continued until 1972, when a leak to
the press resulted in its termination.
The Tuskegee Syphilis Study, cited as "arguably the most infamous
biomedical research study in U.S. history", led to the 1979 Belmont
Report, the establishment of the National Human Investigation Board,
and the requirement for establishment of Institutional Review
Boards.
Declaration of Helsinki (1964 - )
The Declaration of Helsinki was developed by the World Medical Association (WMA),
as a set of ethical principles for the medical community regarding human
experimentation (1964 - 2000). It is widely regarded as the cornerstone document
of human research ethics (WMA 2000, Bonjak 2001, Tyebkhan 2003), although it is
not a legally binding instrument in international law…
Basic principles
The fundamental principle is respect for the individual (Article 8), their right to self
determination and the right to make informed decisions (Articles 20, 21 and 22)
regarding participation in research, both initially and during the course of the
research. The investigator's duty is solely to the patient (Articles 2, 3 and 10) or
volunteer (Articles 16, 18), and while there is always a need for research (Article 6),
the subject's welfare must always take precedence over the interests of science and
society (Acle 5), and ethical considerations must always take precedence over laws
and regulations (Article 9).
The 1975 revision was almost twice the length of the original, and introduced the
concept of oversight by an 'independent committee' (Article I.2) which became a system
of Institutional Review Boards (IRB) in the US, and research ethics committees or
ethical review boards in other countries (Riis 1977).
Ethics in the Social Sciences
The Milgram Experiment (1963)
The experimenter (E) orders the teacher (T), the subject of the experiment, to give
what the subject believes are painful electric shocks to a learner (L), who is
actually an actor and confederate. The subjects believed that for each wrong answer,
the learner was receiving actual shocks, but in reality there were no shocks. Being
separated from the subject, the confederate set up a tape recorder integrated with the
electro-shock generator, which played pre-recorded sounds for each shock level.
In Milgram's first set of experiments, 65 percent (26 of 40) of experiment participants
administered the experiment's final 450-volt shock, though many were very
uncomfortable doing so; at some point, every participant paused and questioned the
experiment, some said they would refund the money they were paid for participating in
the experiment. No participant steadfastly refused to administer shocks before the 300volt level…
The Stanford Prison Experiment (1971)
The Stanford prison experiment was a study of the psychological effects of becoming a prisoner
or prison guard. The experiment was conducted in 1971 by a team of researchers led by
psychologist Philip Zimbardo at Stanford University. Twenty-four undergraduates were selected out of
70 to play the roles of both guards and prisoners and live in a mock prison in the basement of the
Stanford psychology building. The students who were assigned to be the prisoners were paid $15 a
day as an incentive, which is worth about $80 per day in 2008 currency.
Prisoners and guards rapidly adapted to
their roles, stepping beyond the boundaries
of what had been predicted and leading to
dangerous and psychologically damaging
situations. One-third of the guards were
judged to have exhibited "genuine" sadistic
tendencies, while many prisoners were
emotionally traumatized and two had to
be removed from the experiment early.
Finally, Zimbardo terminated the experiment
because he realized that his experiment
was unethical.
… Mattresses were a valued item in the spartan prison, so the guards would punish prisoners by
removing their mattresses, leaving them to sleep on concrete. Some prisoners were forced to go nude
as a method of degradation, and some were subjected to sexual humiliation, including simulated
homosexual sex.
Tearoom Trade (1970)
Tearoom Trade was an ethnographic study of
anonymous male-male sexual encounters in
public toilets (a practice known as "tearooming" in U.S. gay slang and "cottaging" in
British English). The ethnographer, Laud
Humphreys, asserted that the men
participating in such activity came from
diverse social backgrounds, had differing
personal motives for seeking homosexual
contact in such venues, and variously selfperceived as "straight," "bisexual," or "gay."
Humphreys' study has been criticized by
sociologists on ethical grounds in that he
observed acts of homosexuality by masquerading
as a voyeur, "did not get his subjects’
consent, tracked down names and addresses
through license plate numbers and
interviewed the men in their homes in
disguise and under false pretenses." It was
later speculated that he participated in the
homosexual acts himself in order to gain
entrance into this subculture.
Ethical Principles*
*as embodied by ethics committees & guidelines
1. A
void
doin
g har
2. S
m.
eek i
cons nformed
ent.
3. R
espe
ct pr
ivacy
.
Different ethics for different (research) cultures.
The Experiment (2002)
‘The Experiment’ recreated the Stanford Prison Experiment on TV…
…a group of former prisoners and guards conspired
to install a new prisoner-guard regime in which they
would be the "new guards". Now, however, they
wanted to run the system along much harsher lines
— akin to those seen in the Stanford study. Signs
that this would compromise the well-being of
participants led to early termination of the study.
The Experiment had to secure formal ethical approval from the University of
Exeter. Key safeguards included:
(1) Screening of participants by clinical psychologists, together with medical and police
checks.
(2) Round-the-clock monitoring by clinical psychologists, medics and security personnel.
(3) The creation of a six-person Ethics Committee… This committee was given the
power to stop The Experiment at any time if… participants were coming to
psychological or other harm. This was the first time that the BBC had given such
power to an external, independent body.
Reality TV
Contemporary Art
Sophie Calle
Contemporary Art
Gillian Wearing
Ethics for Design (Research)
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Artistic
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Ethics for Design (Research)
What are the implications of design-led research of settings?
Can we convey particularities without invading privacy?
Is it okay to use user research to inspire critical caricatures?
Can designed artefacts misrepresent their users?
Should ethics be subject to critical comment?
How do we go about getting informed consent?
What other questions should we ask?
INFORMED CONSENT
The Datacatcher is an experimental mobile device we have developed for our research. We will
be collecting data about the experiences people have with it through video documentaries, and
possibly also visits and interviews. Will also collect anonymised logs of the messages it shows,
poll responses, and their locations.
We will report the data we collect in several ways. Excerpts may appear in presentations to
students, academic articles and lectures, on our website, exhibitions, in newspapers, or on
websites such as YouTube. So if you give permission, the material we collect from you might be
seen by many people.
We take ethical issues very seriously. We will never intentionally intrude on your privacy or
embarrass you. We will keep the data we collect from you anonymous unless you ask us to be
named (e.g. to take credit for images). All contact information (e.g. address, phone, email) will be
kept private and will not be shared. You may be identifiable from the materials you return,
however, particularly if you appear in videos or photographs.
Trying the Datacatcher is entirely voluntary and you may return the device at any time. You must
sign and return this consent form if you would like to try one, however. Signing this form
indicates that you agree to our using the materials we collect during your participation as
described above.
I hereby confirm that I give consent for material derived from the project to be used as outlined
above. I understand that my full name and contact details will not be associated with the
materials I return outside the project team. I confirm that the purpose for which the material
will be used has been explained to me in terms that I have understood and I agree to the use of
the material in such circumstances. I understand that if the material is required for use in any
other way than that explained to me then my consent to this will be specifically sought.
Yes, I'd like to try the Datacatcher! (Please tick to accept the conditions)
I give my informed consent to participate in this study.
I will care for the device and try using it.
I am happy for my data and images to be used in public presentations.
I will be happy to be filmed using and talking about the Datacatcher.
Please go to www.datacatcher.org to book and appointment with the filmmakers.
Print name:
Signed:
Date:
PARTICIPANT COPY
Ethics for Design (Research)
What are the implications of design-led research of settings?
Can we convey particularities without invading privacy?
Is it okay to use user research to inspire critical caricatures?
Can designed artefacts misrepresent their users?
Should ethics be subject to critical comment?
How do we go about getting informed consent?
What other questions should we ask?
Ethics for Design (Research)
Medical Ethics
?
Social
Science Ethics
Artistic
Ethics
?
?
Design
(Research)
?
Television
Ethics