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

Research output: Contribution to journalArticle

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.

Details

Authors
Organisations
External organisations
  • Stellenbosch Institute for Advanced Study
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Ethnology
  • Psychology

Keywords

  • Huntington Disease, identity , medical experiments, focus group, coping behavior
Original languageEnglish
Article number15
Pages (from-to)72
Number of pages87
JournalOpen Journal of Medical Psychology
Volume5
Publication statusPublished - 2016 Oct 16
Publication categoryResearch
Peer-reviewedYes

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