The precise meaning of “human dignity” is increasingly being questioned in ethics and law. Is human dignity an adequate guide to policymaking in today’s biotechnological era? This article is an attempt to answer this thorny issue. The emergence of the concept of human dignity as a key point of reference for the regulation of modern science and technology in the European Union is evaluated. The main contribution of this article is to prove that in EU Directives and Recommendations, human dignity (...) is not an elusive concept but rather a regulatory restraint in European public policies on biotechnology, particularly through the influence of the European Group on Ethics in Science and New Technologies. Two examples will be elaborated to prove this claim: first, the issue of intellectual property in biotechnological inventions, and secondly the funding of research proposals involving the use of human embryonic stem cells. These examples prove that the principle of human dignity is not an empty concept as some philosophers and bioethicists claim but rather a normative guideline that is shaping European policies on biotechnology. Content Type Journal Article Category Article Pages 155-184 DOI 10.1558/hrge.v17i2.155 Authors Emmanuel Agius, University of Malta, Room 204 Humanities A Building, Msida MSD 2080, Malta Journal Human Reproduction & Genetic Ethics Online ISSN 2043-0469 Print ISSN 1028-7825 Journal Volume Volume 17 Journal Issue Volume 17, Number 2 / 2011. (shrink)

BackgroundDecision-making in end-stage dementia is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems.AimThis study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing (...) difficulties in ESD in long-term care in Malta.MethodThe study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis.ResultsFour themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient’s dignity.ConclusionDecision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life. (shrink)