Retained human tissues: a molecular genetics goldmine or modern grave robbing? A legal approach to obtaining and using stored human samples

Abstract

The widespread retention of thousands of children's organs in the UK without parental consent has met with public outrage and calls for government intervention. These issues are brought to the fore by developments in molecular genetics that allow a person's full DNA sequence to be obtained from miniscule samples. The molecular genetic testing of retained organs and human tissue can greatly benefit family members and future research, but only if proposals to alter regulation can be successfully implemented. A review of present UK regulation indicates that it is both unclear and inadequate to ensure sufficient ethical/legal safeguards to satisfy public expectations. This paper reviews the legal and ethical status of previously retained samples. It discusses whether they may be regarded as abandoned if the patient cannot be traced and then used anonymously in ethically approved research. The legal status of retained samples is discussed as regards ownership and commerciality. This raises the question of who is the next of kin to give consent if the samples are to be regarded as gifted. Present proposals risk damaging the future by too much sensitivity. Getting the balance of interests right at this juncture is vital groundwork for such beneficial medical developments.