Table 1.

Summary of major ethical issues in priori disease and where addressed in text

Research	• Conducting randomized, placebo-controlled clinical trials in fatal disease	Section 2.1
	• Psychological consequences of research into identifying early disease biomarkers, particularly among genetic prion disease subjects, when no treatment yet available.	Section 2.1
Genetic Prion Disease (gPrDs)	• Establishing policy on managing and reducing risk of potential transmission with families not wishing to receive genetic results.	Section 2.3.2
	• Managing release of genetic information, particularly when all family members not in agreement.	Section 2.2.2
	• Possible coercion of individuals at-risk for gPrD to participate in research	Section 2.2.1
	• Family planning in the context of autosomal dominant disease	Section 2.2.3
Incorrect Diagnoses	• Clinical and radiological misdiagnoses and consequences for patients, families and medical system.	Section 2.3
Transmissibility	• Delay of appropriate medical intervention for fear of prion contamination of limited medical equipment required for other patients	Section 2.4.3
	• Managing release of information with potential iatrogenic exposure when transmission risks are unclear and carry possibly severe psychological consequences.	Sections 1.2.3.3 and 2.4.2
	• Managing possible interspecies transmission of hunted animals with CWD	Section 2.4.1
End of Life	• Difficulty in obtaining autopsies due to fear from the medical profession	Section 2.5.1
	• When or whether to help families “let go” and avoid life-prolonging measures in a uniformly fatal disease.	Not addressed in this manuscript. For more information please see (Panegyres 2008) and our website at http://memory.ucsf.edu/cjd
	• Questions concerning quality of life and prolonging survival in patients with advanced disease.	Section 1.6 For more in depth information please see (Panegyres 2008)

Panegyres, P. K., Ed. (2008). Dying with dignity in neurodgenerative disorders. Perth, Western Australia, Quality Press.