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Disclosure of reclassified VUS results of deceased patients to family members: current practice

Lascurain, Seth (2018) Disclosure of reclassified VUS results of deceased patients to family members: current practice. Master's Thesis, University of Pittsburgh. (Unpublished)

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Abstract

Purpose: This study was designed to obtain current practices and opinions of genetic counselors surrounding the issue of disclosure for reclassified VUS results for a deceased patient to their relatives.
Methods: A researcher designed survey was distributed to members of the National Society of Genetic Counselors.
Results: Participants reported receiving reclassified VUS results in deceased patients (24%), a majority reported attempting disclosure at least once (93%). Respondents were more likely to disclose if the variant was reclassified as pathogenic (74%) vs. benign (48%). The deceased’s right to confidentiality was rated of lowest and the impact of the variant on family members rated highest importance. A legal mechanism to allow disclosure to relatives was favored by 71% and 97% felt the issue important enough to pursue if such a process was in place. A minority of participants felt a legal (10%) and ethical (27%) obligation of consent before disclosure, and a greater proportion were undecided on the legal (43%) and ethical (40%) need for consent.
Conclusions: The disclosure of reclassified VUS results for a deceased patient is a complex issue which has little guidance. Results of this study clarify the current state of clinical practice and opinion on this issue and contribute to the understanding of this important public health issue.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Lascurain, Sethsel99@pitt.edusel99
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairMai, Phuongmaip@mail.magee.com
Committee CoChairThull, Darcydthull@magee.edu
Committee MemberDurst, Andreaadurst@pitt.edu
Committee MemberBear, Toddtobst2@pitt.edu
Date: 17 March 2018
Date Type: Submission
Defense Date: 20 April 2018
Approval Date: 28 June 2018
Submission Date: 26 April 2018
Access Restriction: 5 year -- Restrict access to University of Pittsburgh for a period of 5 years.
Number of Pages: 123
Institution: University of Pittsburgh
Schools and Programs: Graduate School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: No
Uncontrolled Keywords: Reclassified, VUS, Disclosure, Deceased, Relatives
Date Deposited: 28 Jun 2018 20:08
Last Modified: 28 Jun 2018 20:08
URI: http://d-scholarship.pitt.edu/id/eprint/33896

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