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Patient experience and barriers with family communication after receiveing genomnic information from a biobank

Descriptive

TitleInfo
Title
Patient experience and barriers with family communication after receiveing genomnic information from a biobank
TitleInfo (type = alternative)
Title
Patient experience and barriers with family communication after receiving genomnic information from a biobank
Name (type = personal)
NamePart (type = family)
O'Brien
NamePart (type = given)
Caitlin N.
NamePart (type = date)
1995-
DisplayForm
Caitlin N. O'Brien
Role
RoleTerm (authority = RULIB)
author
Name (type = personal)
NamePart (type = family)
Heiman
NamePart (type = given)
Gary
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Gary Heiman
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Advisory Committee
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chair
Name (type = personal)
NamePart (type = family)
Joines
NamePart (type = given)
Jessica
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Jessica Joines
Affiliation
Advisory Committee
Role
RoleTerm (authority = RULIB)
internal member
Name (type = personal)
NamePart (type = family)
Seymour
NamePart (type = given)
Christy
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Christy Seymour
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Advisory Committee
Role
RoleTerm (authority = RULIB)
internal member
Name (type = personal)
NamePart (type = family)
Botti
NamePart (type = given)
Christina
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Christina Botti
Affiliation
Advisory Committee
Role
RoleTerm (authority = RULIB)
internal member
Name (type = corporate)
NamePart
Rutgers University
Role
RoleTerm (authority = RULIB)
degree grantor
Name (type = corporate)
NamePart
School of Graduate Studies
Role
RoleTerm (authority = RULIB)
school
TypeOfResource
Text
Genre (authority = marcgt)
theses
OriginInfo
DateCreated (encoding = w3cdtf); (keyDate = yes); (qualifier = exact)
2019
DateOther (encoding = w3cdtf); (qualifier = exact); (type = degree)
2019-05
Language
LanguageTerm (authority = ISO 639-3:2007); (type = text)
English
Abstract (type = abstract)
The purpose of this study was to examine the breadth of participant experiences communicating with family members after receiving genetic information from a biobank. Interviews were conducted with MyCode participants who had received results and with family members of participants who had undergone cascade testing. MyCode is a population-based biobank where participants consent to exome sequencing for research and the possibility that Geisinger may return genetic information important to their health. Results for pathogenic and likely pathogenic variants in clinically actionable genes are reported to MyCode participants and their providers. Sixty-three interviews were analyzed for the purpose of this study. The barriers revealed were similar to those found in the literature, with the most common being physical and emotional distance, proband perception that at-risk relatives were too old, not knowing who was at risk, and timing of the communication. Analysis of barriers to cascade testing showed that the most common reasons family members chose not to test were bad timing, thinking they were not at risk or too old for genetic testing, and disinterest in the information. Additionally, several participants and family members believed they had been tested by other means such as direct to consumer (DTC) testing. As access to genetic testing expands, it will be necessary to ensure that consumers fully understand the implications and limitations of different types of genetic testing. Furthermore, continued efforts are needed to assist probands in how to explain their results to family members in order to overcome barriers to family communication and cascade testing.
Subject (authority = local)
Topic
Biobank
Subject (authority = RUETD)
Topic
Microbiology and Molecular Genetics
Subject (authority = LCSH)
Topic
Communication in medicine
Subject (authority = LCSH)
Topic
Biobanks -- Patients
RelatedItem (type = host)
TitleInfo
Title
Rutgers University Electronic Theses and Dissertations
Identifier (type = RULIB)
ETD
Identifier
ETD_9644
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application/pdf
InternetMediaType
text/xml
Extent
1 online resource (iv, 30 pages)
Note (type = degree)
M.S.
Note (type = bibliography)
Includes bibliographical references
RelatedItem (type = host)
TitleInfo
Title
School of Graduate Studies Electronic Theses and Dissertations
Identifier (type = local)
rucore10001600001
Location
PhysicalLocation (authority = marcorg); (displayLabel = Rutgers, The State University of New Jersey)
NjNbRU
Identifier (type = doi)
doi:10.7282/t3-0xy8-7295
Genre (authority = ExL-Esploro)
ETD graduate
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Rights

RightsDeclaration (ID = rulibRdec0006)
The author owns the copyright to this work.
RightsHolder (type = personal)
Name
FamilyName
O'Brien
GivenName
Caitlin
Role
Copyright Holder
RightsEvent
Type
Permission or license
DateTime (encoding = w3cdtf); (qualifier = exact); (point = start)
2019-04-01 09:54:16
AssociatedEntity
Name
Caitlin O'Brien
Role
Copyright holder
Affiliation
Rutgers University. School of Graduate Studies
AssociatedObject
Type
License
Name
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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Technical

RULTechMD (ID = TECHNICAL1)
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ETD
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windows xp
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1.4
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DateCreated (point = end); (encoding = w3cdtf); (qualifier = exact)
2019-03-30T12:56:24
DateCreated (point = end); (encoding = w3cdtf); (qualifier = exact)
2019-03-30T12:56:24
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