Abstract Details

Title Ethical Issues in Human Prion Diseases from a Major Referral Center

Topic Ethics, Pain and Palliative Care

Presentation(s) P02 - (-)

Poster/Presentation
Number 007

Objective

Background BACKGROUND: Human prion diseases are currently untreatable, rapidly progressive, fatal neurodegenerative conditions that are unique in medicine in that they occur three in sporadic, genetic, and acquired forms. As a major clinical research center for prion diseases, and having run the first U.S. CJD treatment trial, we have seen more than 500 cases of rapidly progressive dementias, including many prion diseases, in the past 10 years and have dealt with several challenging ethical issues.

Design/Methods DESIGN/METHODS: Literature, clinical database, and record review with case presentations.

Results RESULTS: Some ethical issues faced include: [bull]Conducting randomized, placebo-controlled clinical trial in fatal disease [bull]Delay of appropriate medical intervention for fear of prion contamination of limited medical equipment required for other patients [bull]Establishing policy on managing and reducing risk of potential transmission with families not wishing to receive genetic results. [bull]Difficulty in obtaining autopsies due to fear from the medical profession [bull]Clinical and radiological misdiagnoses and consequences for patients, families and medical system. [bull]Managing release of genetic information, particularly when all family members not in agreement. [bull]Managing release of information with potential iatrogenic exposure when transmission risks are unclear and carry possibly severe psychological consequences. [bull]Psychological consequences of research into identifying early disease biomarkers, particularly among genetic prion disease subjects, when no treatment yet available. [bull]When or whether to help families "let go" and avoid life-prolonging measures in a uniformly fatal disease. [bull]Questions concerning quality of life and prolonging survival in patients with advanced disease.

Conclusions CONCLUSIONS: Many of the harmful implications of human prion diseases for individual, family, and society might be mitigated if potential ethical complications are anticipated and carefully considered. These considerations are especially salient when conducting research in uniformly fatal and particularly genetic diseases.

Authors/Disclosures
Kendra Bechtel PRESENTER	No disclosure on file
	No disclosure on file
	No disclosure on file
Eric Williamson, MD (UCLA/West Los Angeles Veterans Admin Hospital)	Dr. Williamson has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for TG therapeutics. Dr. Williamson has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. The institution of Dr. Williamson has received research support from Biogen. Dr. Williamson has received personal compensation in the range of $100,000-$499,999 for serving as a Employee with Veterans administration.
Michael D. Geschwind, MD, PhD, FAAN (UCSF)	Dr. Geschwind has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Brainstorm Cell Therapeutics, Inc.. Dr. Geschwind has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Walter Grubb. Dr. Geschwind has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Gerson Lehrman Group. Dr. Geschwind has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Reata Pharmaceuticals, Inc..
Valerie E. Wojna, MD, FAAN (Nuerology Division, UPR MSC SoM)	Dr. Wojna has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Puerto Rico Health Sciences Journal, University of Puerto Rico Medical Sciences Campus. The institution of Dr. Wojna has received research support from NIH.

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