Surrogate consent and advocacy for research participation in cases of severe brain injury
Currently, there is no established standard of care for brain injury patients in a vegetative or minimally conscious state. New technology, such as deep brain stimulation, may hold promise as a treatment, but research efforts for these technologies can be complicated and stunted by ethical considerations.
Monique Lanoix, an expert in medical ethics, has suggested two potential issues that decision-making surrogates face when deciding whether or not to consent their patient for research participation. One issue is that, without an established standard of care, patients may get at least some medical or rehabilitation treatment from the study. Another issue is that surrogates may interpret the study as optimal care and consent to research participation with hope for better services.
Researchers should therefore be aware of how these issues can shape the surrogate's decision and focus on education and communication of their research protocol.
Lanoix M. Where angels fear to tread: Proxy consent and novel technologies. Brain Injury. (September 2010).