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“With This Disease, You Take Whatever Chances There Are”—A Study on Socio-Cultural and Psychological Aspects of Experiments Regarding Huntington’s Disease

Lundin, Susanne LU ; Torkelson, Eva LU and Petersen, Marsanna LU (2016) In Open Journal of Medical Psychology 5. p.72-72
Abstract
Although relatively rare, Huntington’s disease (HD) has fatal consequences. There is no cure for the disease, which leads to an early death. Worldwide, scientists are trying to develop therapeutic methods that could cure the disease, including new molecular gene therapeutic methods. At Lund University, research on HD is now about to step from animal models to trials with humans. The project is special in its design since it involves both medical studies and socio-cultural and psychologi- cal research to explore and meet the many challenges that experimental trials with HD patients give rise to. The aim of the present study was to investigate the view- points of individuals affected by HD on the issues of participation and exerting in-... (More)
Although relatively rare, Huntington’s disease (HD) has fatal consequences. There is no cure for the disease, which leads to an early death. Worldwide, scientists are trying to develop therapeutic methods that could cure the disease, including new molecular gene therapeutic methods. At Lund University, research on HD is now about to step from animal models to trials with humans. The project is special in its design since it involves both medical studies and socio-cultural and psychologi- cal research to explore and meet the many challenges that experimental trials with HD patients give rise to. The aim of the present study was to investigate the view- points of individuals affected by HD on the issues of participation and exerting in- fluence if taking part in a medical study on gene therapy that has not previously been tested on humans. A total of 16 participants, recruited through the national association for HD and through the neurological clinic at Lund University in Swe- den, took part in a focus group or in a survey study. A thematic analysis, to explore the transcribed text from the focus groups as well as from the written mail re- sponses, was conducted by means of Nvivo, a program for qualitative data analysis. Results showed three main themes expressing reasons for participation: participa- tion as a last resort, as an activity of hope, and as a way to take responsibility for the development of a cure that will benefit future generations. The responses relat- ing to the question about affected individuals’ view of exerting influence resulted in two themes. The first theme was having a voice when researchers design ex- periments, which may give a sense of receiving respect. The second was that influ- ence is an essential part of the information process before agreeing to take part in an experimental trail. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Huntington Disease, identity , medical experiments, focus group, coping behavior
in
Open Journal of Medical Psychology
volume
5
pages
87 pages
publisher
SciRes, Scientific Research Publishing, SCIRP
ISSN
2165-9370
DOI
10.4236/ojmp.2016.54009
language
English
LU publication?
yes
id
e2631c2e-08da-4d41-a145-bf6d9240b2b8
date added to LUP
2016-10-17 14:02:14
date last changed
2016-11-24 15:57:24
@misc{e2631c2e-08da-4d41-a145-bf6d9240b2b8,
  abstract     = {Although relatively rare, Huntington’s disease (HD) has fatal consequences. There is no cure for the disease, which leads to an early death. Worldwide, scientists are trying to develop therapeutic methods that could cure the disease, including new molecular gene therapeutic methods. At Lund University, research on HD is now about to step from animal models to trials with humans. The project is special in its design since it involves both medical studies and socio-cultural and psychologi- cal research to explore and meet the many challenges that experimental trials with HD patients give rise to. The aim of the present study was to investigate the view- points of individuals affected by HD on the issues of participation and exerting in- fluence if taking part in a medical study on gene therapy that has not previously been tested on humans. A total of 16 participants, recruited through the national association for HD and through the neurological clinic at Lund University in Swe- den, took part in a focus group or in a survey study. A thematic analysis, to explore the transcribed text from the focus groups as well as from the written mail re- sponses, was conducted by means of Nvivo, a program for qualitative data analysis. Results showed three main themes expressing reasons for participation: participa- tion as a last resort, as an activity of hope, and as a way to take responsibility for the development of a cure that will benefit future generations. The responses relat- ing to the question about affected individuals’ view of exerting influence resulted in two themes. The first theme was having a voice when researchers design ex- periments, which may give a sense of receiving respect. The second was that influ- ence is an essential part of the information process before agreeing to take part in an experimental trail.},
  author       = {Lundin, Susanne and Torkelson, Eva and Petersen, Marsanna},
  issn         = {2165-9370},
  keyword      = {Huntington Disease,identity  ,medical experiments,focus group,coping behavior},
  language     = {eng},
  month        = {10},
  pages        = {72--72},
  publisher    = {ARRAY(0xa441090)},
  series       = {Open Journal of Medical Psychology},
  title        = {“With This Disease, You Take Whatever Chances There Are”—A Study on Socio-Cultural and Psychological Aspects of Experiments Regarding Huntington’s Disease},
  url          = {http://dx.doi.org/10.4236/ojmp.2016.54009},
  volume       = {5},
  year         = {2016},
}