Research involving subjects with Alzheimer's disease in Italy

The possible role of family members

Corinna Porteri, Carlo Petrini

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

Background: Alzheimer's disease is a very common, progressive and still incurable disease. Future possibilities for its cure lie in the promotion of research that will increase our knowledge of the disorder's causes and lead to the discovery of effective remedies. Such research will necessarily involve individuals suffering from Alzheimer's disease. This raises the controversial issue of whether patients with Alzheimer's disease are competent to give their consent for research participation. Discussion: We discuss the case of subjects with Alzheimer's disease who may have impaired decision-making capacity and who could be involved in research protocols, taking into consideration aspects of the Italian normative framework, which requires a court-appointed legal representative for patients who are not able to give consent and does not recognise the legal value of advance directives. We show that this normative framework risks preventing individuals with Alzheimer's disease from taking part in research and that a new policy that favours research while promoting respect for patients' well-being and rights needs to be implemented. Summary: We believe that concerns about the difficulty of obtaining fully valid consent of patients with Alzheimer's disease should not prevent them from participating in clinical trials and benefiting from scientific progress. Therefore, we argue that the requirement for patients to have a legal representative may not be the best solution in all countries and clinical situations, and suggest promoting the role of patients' family members in the decision-making process. In addition, we outline the possible role of advance directives and ethics committees.

Original languageEnglish
Pages (from-to)1-8
Number of pages8
JournalBMC Medical Ethics
DOIs
Publication statusAccepted/In press - Mar 4 2015

Fingerprint

dementia
Italy
family member
Alzheimer Disease
Research
Advance Directives
Decision Making
Patient Advocacy
scientific progress
Ethics Committees
decision-making process
remedies
respect
promotion
well-being
moral philosophy
Clinical Trials
Disease
decision making
participation

Keywords

  • Alzheimer's disease
  • Clinical trials
  • Competence
  • Family members
  • Legal representative

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Health Policy

Cite this

Research involving subjects with Alzheimer's disease in Italy : The possible role of family members. / Porteri, Corinna; Petrini, Carlo.

In: BMC Medical Ethics, 04.03.2015, p. 1-8.

Research output: Contribution to journalArticle

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