2.50
Hdl Handle:
http://hdl.handle.net/10755/160170
Type:
Presentation
Title:
Testing for Neurofibromatosis 2: The Ethics of Parents' Decisions
Abstract:
Testing for Neurofibromatosis 2: The Ethics of Parents' Decisions
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2005
Author:Twomey, John, PhD, MSN, BSN, PNP
P.I. Institution Name:University of Iowa
Title:Post Doctoral Fellow
Contact Address:College of Nursing, NB 305, Iowa City, IA, 52242, USA
Contact Telephone:401-480-7109
A review of the literature about testing for genetic disorders in children prior to the emergence of symptoms reveals a divergence between the beliefs of professionals and the possible desires of parents to access such services. Several professional groups have published documents that recommend limiting presymptomatic testing to situations that would provide direct benefit to children. The few studies about parental decision-making seem to indicate that parents seek more leeway about such choices, particularly when they perceive testing to allow them to aid their children about future health and life plans. Neurofibromatosis 2 represents the type of genetic disorder that has theoretical arguments for and against presymptomatic genetic testing in children. Given the fact that expressivity in NF2 is so variable and interventions are not available until symptoms occur, uncritical acceptance of widespread genetic testing in asymptomatic children may not be advisable. Using a population of NF2 families who had made the decision about testing their children, 10 parents from nine families with a parent diagnosed with NF2 were interviewed about the reasons they considered for having their minor child(ren) tested for the NF2 mutation. The sample included eight mothers, two fathers and represented parents of 27 children - seven diagnosed children with NF2. The parents in this study described personal as well as past family medical history as driving their decision about testing their children. Their replies did not reflect a primary concern about their child's moral welfare when making the decision, e.g., that genetic testing presents a risk to the child's privacy. From an ethical point of view, parents frequently used a perspective that theoretically is more akin to communitarian or caring in its theoretical framework, rather than principled theory. This presentation will discuss the implications for inclusion of such frameworks when constructing nursing interventions during genetic testing education.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Midwest Nursing Research Society

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleTesting for Neurofibromatosis 2: The Ethics of Parents' Decisionsen_GB
dc.identifier.urihttp://hdl.handle.net/10755/160170-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Testing for Neurofibromatosis 2: The Ethics of Parents' Decisions</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Midwest Nursing Research Society</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2005</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Twomey, John, PhD, MSN, BSN, PNP</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Iowa</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Post Doctoral Fellow</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">College of Nursing, NB 305, Iowa City, IA, 52242, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">401-480-7109</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">john-twomey@uiowa.edu</td></tr><tr><td colspan="2" class="item-abstract">A review of the literature about testing for genetic disorders in children prior to the emergence of symptoms reveals a divergence between the beliefs of professionals and the possible desires of parents to access such services. Several professional groups have published documents that recommend limiting presymptomatic testing to situations that would provide direct benefit to children. The few studies about parental decision-making seem to indicate that parents seek more leeway about such choices, particularly when they perceive testing to allow them to aid their children about future health and life plans. Neurofibromatosis 2 represents the type of genetic disorder that has theoretical arguments for and against presymptomatic genetic testing in children. Given the fact that expressivity in NF2 is so variable and interventions are not available until symptoms occur, uncritical acceptance of widespread genetic testing in asymptomatic children may not be advisable. Using a population of NF2 families who had made the decision about testing their children, 10 parents from nine families with a parent diagnosed with NF2 were interviewed about the reasons they considered for having their minor child(ren) tested for the NF2 mutation. The sample included eight mothers, two fathers and represented parents of 27 children - seven diagnosed children with NF2. The parents in this study described personal as well as past family medical history as driving their decision about testing their children. Their replies did not reflect a primary concern about their child's moral welfare when making the decision, e.g., that genetic testing presents a risk to the child's privacy. From an ethical point of view, parents frequently used a perspective that theoretically is more akin to communitarian or caring in its theoretical framework, rather than principled theory. This presentation will discuss the implications for inclusion of such frameworks when constructing nursing interventions during genetic testing education.</td></tr></table>en_GB
dc.date.available2011-10-26T22:41:29Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T22:41:29Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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