Clinical experiments for Huntington's disease. Recommendations to medical researchers regarding how to inform potential participants


  • Marsanna Petersen Department of Arts and Cultural Sciences, LU
  • Niclas Hagen Department of Psychology, LU
  • Eva Torkelson Department of Psychology, LU
  • Susanne Lundin Department of Arts and Cultural Sciences, LU


Huntington’s disease, participation, clinical experiments, recommendations


Huntington's disease (HD) is a severe, genetic brain disorder that causes great suffering and leads to an early death. The medical research team in the project Treatments of the Future at Lund University aims to develop a new molecular gene therapeutic method that will give the possibility to cure the disease. The authors’, social- and cultural scientists, mission is to develop recommendations for how information should be designed to potential research subjects in an experimental gene therapy study regarding HD. More specifically, to find and recommend a model that makes it possible for individuals who are affected by HD to decide if they want to participate as research subjects in the clinical trials within Treatments of the Future.






Working Papers