Abstract Details

Title A Survey of Attitudes Towards Genetic Testing in Amyotrophic Lateral Sclerosis (ALS)

Topic Practice, Policy, and Ethics

Presentation(s) P5 - Poster Session 5 (5:30 PM-6:30 PM)

Poster/Presentation
Number 4-064

Objective To identify psychological, social, ethical, and legal issues that surround genetic testing in ALS patients.

Background Genetic testing plays an essential role in determining the risk of ALS in family members of patients and the eligibility of patients in familial ALS (FALS) clinical trials. Despite the growing importance of genetic testing in ALS, questions remain regarding the best way to approach patients for genetic testing and the implications of testing on patients’ psychosocial well-being.

Design/Methods A survey was administered to patients in the Chicagoland area that included questions about demographics, family history, and attitudes toward genetic testing, genetic counseling, and end-of-life options.

Results Thirty patients responded to all or part of the survey, none of whom had a known family history of ALS. Respondents were predominantly male, Catholic, Caucasian, and had been diagnosed for >1 year. Almost all participants had heard about the option of genetic testing, and more than half of them had discussed the risks and benefits with their physician. The strongest factor in influencing whether a patient accepted genetic testing was a desire to help find a cure for ALS. A small number of patients were concerned about genetic testing having a possible deleterious effect on the patient’s own or the family’s emotional well-being. Most participants reported adequate access to psychiatric or psychological care. Only small minority of patients answered a question about physician-assisted suicide.

Conclusions In this preliminary study, only a small number of ALS patients who were surveyed thought that genetic testing would have a negative impact on their psychological well-being or their family's. This survey suggests that physician-assisted suicide is an emotionally impactful issue for ALS patients. Further research is planned to determine whether the present results can be confirmed in a larger regional as well as a national study.

Authors/Disclosures
Changrui Xiao, MD (UC Irvine) PRESENTER	Dr. Xiao has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for WIley. The institution of Dr. Xiao has received research support from NIH.
Fabiane Lima, MD (SCPMG)	No disclosure on file
Erin Zahradnik, MD (University of Chicago)	No disclosure on file
	No disclosure on file
Mark Siegler, MD (MacLean Ctr for Clinical Medical Ethics)	No disclosure on file
Betty C. Soliven, MD (University of Chicago)	Dr. Soliven has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CVS Pharmacy. The institution of Dr. Soliven has received research support from NIH. The institution of Dr. Soliven has received research support from NIH. The institution of Dr. Soliven has received research support from Alexion. The institution of Dr. Soliven has received research support from Roche/Genentech.
Kourosh Rezania, MD, FAAN (University of Chicago)	Dr. Rezania has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Akcea. Dr. Rezania has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alnylam.
Raymond P. Roos, MD, FAAN (University of Chicago Med Ctr)	Dr. Roos has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for MedLink. Dr. Roos has stock in Amazon. Dr. Roos has stock in Amgen. Dr. Roos has stock in Apple. Dr. Roos has stock in Cigna. Dr. Roos has stock in IBM. Dr. Roos has stock in Ionis. Dr. Roos has stock in Pfizer. Dr. Roos has received research support from Lohengrin Foundation.

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