Facilitating future benefit when a participant has a degenerative illness and cannot give consent. Andrew Williams
Very often a child with a severe fixed, or an evolving, neurodegenerative condition cannot give meaningful consent to research. The child’s age and the profundity of their evolving neurological condition make consent impossible. Neurodegenerative conditions are extremely rare, are still very poorly understood and require tertiary/quaternary centre management for appropriate diagnosis and subsequent management. Such management is often highly complex and is at the very frontiers of understanding.
Health care professionals involved in managing such children are faced with accepting the status quo or endeavouring to effect a change that will benefit other such cases in the future through increasing knowledge of the condition by conducting research.
The ethical challenge:
There is a fundamental necessity to develop a knowledge base about the causes of and the evolving clinical pathology of degenerative conditions in order to assist future case management.
The ethical challenge is whether:
a) Such a journey should be undertaken at all, as the medical management is challenging in itself without this additional role.
b) Tempering understandable expectations against realism, that such discoveries generally occur unexpectedly, but usually after a great deal of time and background effort has been put in place.
c) Any answers generally will have a very limited role, if any, for that particular child.
d) Whether to proceed with the research when consent from the child has not been, and is unable to be, obtained.
Contributed by: Dr Andrew N. Williams, Virtual Academic Unit, CDC, Northampton General Hospital, Northampton, NN1 1BD, United Kingdom.
1. http://www.youtube.com/watch?v=y_w_ltD7UhQ Children in Need Appeal 2012, introduced by Dame Helen Mirren accessed December 27th 2012.
2. http://www.thomassfund.org.uk/ accessed September 10th 2012 Thomas’ Fund in Northamptonshire, United Kingdom. This provides in-patient music therapy on paediatric and neonatal wards in Northamptonshire as well as at home for children and young people with life-limiting illnesses or a disability which, for medical reason, means they are too ill to attend school for extended periods.
3. Alzoubidi R., Price S., Smith L., Baas F., & Williams A.N. (2010). A New Subtype of Pontocerebellar Hypoplasia. Dev Med Child Neurol., Volume 52, Issue s1, p. 31.