Ethical issues in predictive testing for Huntington's disease an evidence based case discussion

Abstract

Purpose – Diagnosis of Huntington's disease (HD) is with genetic tests and predictive testing for HD has been available for almost two decades. In the age of advancing genetic techniques, the question arises as to how the predictive tests can affect a person, his or her family and relatives, life choices and future. The paper aims to discuss these issues. Design/methodology/approach – A case study is presented demonstrating the complex issues surrounding genetic testing in HD. Relevant literature was then reviewed to further explore ethical issues linked to predictive testing for HD and also looked into findings on resolving this complex issue. Findings – Predictive testing in HD gives rise to ethical issues in social, legal, economical and imperatively personal aspects of an individual and society. Education and dispersion of knowledge to general society, regarding the test, its impact and also the illness would be a starting point in an attempt to resolve these issues. Need for counselling and support for patients in this context is vital and hence the imperative need to ensure provisions for standardised training and supply of professionals in this setting. Universal and enforceable framework along the lines of International Huntington Association recommendation should be adopted nationally. Originality/value – This paper presents a case study with significant value in demonstrating the challenges faced by genetic testing in HD, and provides insight in to this issue significant for all clinicians.