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Motivations for pursuing genetic counseling to explore the availability of panel genetic testing: a pilot study
Descriptive
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Title
Motivations for pursuing genetic counseling to explore the availability of panel genetic testing: a pilot study
Name
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Gerber
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Jessalyn
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1996
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Gerber, Jessalyn, 1996-
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author
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Joines
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Jessica
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Jessica Joines
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Advisory Committee
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chair
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(type = family)
Grumet
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Sherry
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Sherry Grumet
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Advisory Committee
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outside member
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NamePart
(type = family)
McDaniels
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(type = given)
Brianna
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Brianna McDaniels
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Advisory Committee
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outside member
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(type = family)
D'Elia
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Sandra
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Sandra D'Elia
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Advisory Committee
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outside member
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Rutgers University
Role
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degree grantor
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School of Graduate Studies
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school
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theses
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2020
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2020-05
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English
Abstract
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Little is known about the factors that motivate or deter patients from pursuing updated genetic testing after previously receiving negative or uncertain results. The purpose of this study was to investigate which factors influenced patients’ decisions to either accept or decline the invitation to return to the genetic counseling clinic to discuss updated genetic testing for breast and ovarian cancer. Four hundred forty-six individuals who had previously tested negative or had a variant of uncertain significance in BRCA1 or BRCA2 were mailed a letter informing them of the availability of breast cancer gene panels and inviting them to schedule an appointment with a cancer genetic counselor to discuss updated testing options. Patients who returned were asked to complete a survey about what motivated them to return, and patients who declined were given the opportunity to complete a survey detailing their reasons for declining. The response rate to the letter was 7.83% when we include all patients who returned for testing as well as patients who responded to the survey for those not returning for updated testing. The surveys on motivations and deterrents required the patients to rate six different factors from 1 (not important) to 5 (very important) in their decision to return or not return for genetic counseling. In addition, patients were able to rank those factors from most important to least important in their decision. Patients were also given the opportunity to write-in other factors that may have influenced their decision. We discovered that the factors that most influenced patients to return were a desire to learn information for their family members and a desire to aid their own health. The main reasons patients declined the invitation were a perceived lack of benefit of updated testing and concerns about the cost of testing. This data provides valuable insight into the factors that motivate and deter patients to consider updated genetic testing and can shape how clinicians inform their patients about expanded genetic testing options.
Subject
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Topic
Updated testing
Subject
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Topic
Microbiology and Molecular Genetics
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Title
Rutgers University Electronic Theses and Dissertations
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ETD
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Title
School of Graduate Studies Electronic Theses and Dissertations
Identifier
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rucore10001600001
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ETD_10653
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doi:10.7282/t3-zb2z-2t43
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application/pdf
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text/xml
Extent
1 online resource (v, 33 pages)
Note
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M.S.
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Includes bibliographical references
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NjNbRU
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ETD graduate
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Rights
RightsDeclaration
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The author owns the copyright to this work.
RightsHolder
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Name
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Gerber
GivenName
Jessalyn
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Permission or license
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2020-03-26 14:45:39
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Jessalyn Gerber
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Copyright holder
Affiliation
Rutgers University. School of Graduate Studies
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License
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Author Agreement License
Detail
I hereby grant to the Rutgers University Libraries and to my school the non-exclusive right to archive, reproduce and distribute my thesis or dissertation, in whole or in part, and/or my abstract, in whole or in part, in and from an electronic format, subject to the release date subsequently stipulated in this submittal form and approved by my school. I represent and stipulate that the thesis or dissertation and its abstract are my original work, that they do not infringe or violate any rights of others, and that I make these grants as the sole owner of the rights to my thesis or dissertation and its abstract. I represent that I have obtained written permissions, when necessary, from the owner(s) of each third party copyrighted matter to be included in my thesis or dissertation and will supply copies of such upon request by my school. I acknowledge that RU ETD and my school will not distribute my thesis or dissertation or its abstract if, in their reasonable judgment, they believe all such rights have not been secured. I acknowledge that I retain ownership rights to the copyright of my work. I also retain the right to use all or part of this thesis or dissertation in future works, such as articles or books.
Copyright
Status
Copyright protected
Availability
Status
Open
Reason
Permission or license
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2020-04-06T16:15:23
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2020-04-06T16:15:23
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