Cancer Research in Switzerland - Krebsliga Schweiz

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Within the patient group, level of fatigue was strongly associated
with anxiety, depression, sleep quality, and pain
and dyspnea complaints. However, fatigue was weakly
and inconsistently related to physiological or medical risk
parameters.
Conclusions
Cardiac autonomic functioning may be impaired among
HSCT survivors, but patterns of daytime activity are similar
to healthy controls. HSCT fatigue appears to be related
more to extent of perceived symptoms than to concurrent
physiological functioning or medical risk indices. The findings
suggest that psychological processes related to symptom
perception may be importantly involved in the development
and maintenance of fatigue. These findings may
contribute to understanding and treating fatigue in HSCT
survivors.
Project coordinator
Prof. Dr. Alexander Kiss
Abteilung Psychosomatik
Universitätsspital Basel
Petersgraben 4
CH-4031 Basel
Contact:
Dr. Paul Grossmann
Phone +41 (0)61 265 22 15
grossmanp@uhbs.ch
Lehr Hans-Anton | Biomedical research on human
tissues: In the twilight zone between autonomy and
data protection. What do health professionals, patients
and lay persons think about issues of consent and
transparency in medical research, teaching, and quality
control? (OCS 02209-02-2008)
Scientific research is of key importance in the development
of knowledge on people and their health. This includes
not only conducting clinical research on individuals
but also research using human tissues. These tissues,
taken in the course of treatment, may be used for research.
Although this is a common practice, progress in
medical science constantly brings up new issues with regard
their use. Advances in this field provide new knowledge
and possibilities for use of the tissues and the data
thus generated, but the advances also raise new ethical
problems, such as the possibility to establish a direct link
between the human tissue and the personal characteristics
of the patient. In view of these developments, it is imperative
to understand how the public perceives the use
of human tissues for research. The present study, conducted
jointly by the University Institute of Pathology
(IUP) and the University Institute of Social and Preventive
Medicine in Lausanne (IUMSP), seeks to analyze the perceptions
and attitudes of different groups in the Swiss
population regarding the conservation and use of human
tissues for research.
This research project includes the following investigations:
a systematic review of the literature, an analysis of
the legal framework surrounding human tissue research,
consultation of experts in the field, a qualitative study of
the perceptions and expectations of the general public
and health professionals regarding the use of human tissues
for research and the development and testing of an
instrument for a general population survey.
Analysis of the scientific literature indicates that current
debate is on the following questions: 1) What information
should be given to patients so that they are able to make
an informed choice? 2) What kind of consent should be
obtained: broad consent or consent to a specific study;
explicit or implicit consent? The literature analysis revealed
that in some countries, studies have been conducted
on perceptions and wishes of the population with
regard to consent. It is to be noted that the studies did not
investigate public expectations regarding what information
should be given. The main results were the following:
a) the general public and patients wish to have the opportunity
to give or withhold consent to use of their tissues;
b) a large majority of persons interviewed would give consent
if asked; c) of the different forms of consent possible,
general consent is favoured by most.
The literature review and the expert interviews allowed us
to identify the main issues at stake and to define the
themes to be discussed in the focus groups. To facilitate
debate, vignettes describing fictitious situations were presented
to the participants. The opinions expressed in the
focus groups, conducted in the Canton of Vaud, indicate
that certain professionals fear that the need to obtain
consent from patients to use of their tissues could act as
a barrier to research. However, the general public and patients
are generally favourable to research. On the other
hand, they do express the wish to be explicitly consulted
and informed of the possibility of such use, perceived
rather as status-enhancing, or, in severe cases, as a means
to make sense of one’s illness.
Patients are ready to consent to use of their tissues for research
on the condition that they are considered partners
by health professionals. In this context, consent is seen as
a means of ensuring that they have been informed rather
than as an opportunity to withhold consent.
Project coordinator
Prof. Dr Hans-Anton Lehr
Institut universitaire de pathologie de Lausanne
Centre hospitalier universitaire vaudois (CHUV)
Rue du Bugnon 25
CH-1011 Lausanne
Phone +41 (0)21 314 71 20
Fax +41 (0)21 314 72 05
hans-anton.lehr@chuv.ch
Rüesch Peter | Information needs of patients with
curable adenocarcinoma of the prostate and professionals’
opinions: An international study (INEPAP)
(KLS 02198-02-2008)
Objectives
Curable cancer of the prostate can be treated by diverse
methods of therapy, each of them being defined by specific
pros and cons. Therefore, treatment decision is challenging,
because patients have to consider a lot of data to
understand the practical consequences of different treatment
options. However, research indicates that men with
prostate cancer are frequently not satisfied with the information
offered: Many report not having received sufficient
data; others complain about redundant, inapt or little
intelligible information. Therefore, it was the purpose