Concerns About Insurance, Privacy/Confidentiality, and Recommendations Regarding Genetic Testing for Hereditary Breast Cancer in Women

2.50
Hdl Handle:
http://hdl.handle.net/10755/165700
Category:
Abstract
Type:
Presentation
Title:
Concerns About Insurance, Privacy/Confidentiality, and Recommendations Regarding Genetic Testing for Hereditary Breast Cancer in Women
Author(s):
MacDonald, Deborah
Author Details:
Deborah MacDonald, City of Hope National Medical Center, Duarte, California, USA
Abstract:
Women presenting for genetic cancer risk assessment (GCRA) may have concerns about insurance discrimination, privacy, and confidentiality related to genetic testing (GT) for hereditary breast/ovarian cancer. These concerns may change following the GCRA process, and may differ between affected and unaffected women. In addition, the estimated probability of a woman carrying a BRCA1 or BRCA2 cancer-associated gene mutation may influence her decision regarding whether or not to undergo testing. We are measuring the impact of GCRA, through the City of Hope Cancer Screening & Prevention Program Network, on women's concerns, risk perception, and management choices. Questionnaires are mailed pre- and post-GCRA to women who had a personal (affected cohort) and/or family history of breast cancer (unaffected cohort). Women were asked to report on a four-point Likert scale (1 = least important; 4 = very important) their level of concern about insurance discrimination, privacy, confidentiality, and mutation probability in deciding whether or not to undergo GT. Here, we present preliminary data for women who did not undergo GT, who responded both to the baseline and the one-month post-GCRA survey. The mean age of the affected cohort (n = 12) was 55 (range 42-67). The mean age of the unaffected cohort (n = 12) was 46 (range 31-64). Overall, prior to GCRA 63% of responders (n = 24) felt that insurance discrimination was an important reason for not getting tested. Following GCRA, only 33% of responders (n = 21) felt the same, (p = 0.05). When assessed for affected (n = 12) versus unaffected status (n = 11), this change was also significant for the unaffected women, (p = <0.05). Overall, there were fewer concerns about privacy/confidentiality after GCRA for both cohorts, (p = 0.046), although there was no significant difference between the two groups. Regarding mutation probability, 91% felt that clinician "recommendation" for GT was important in deciding to have testing pre-GCRA and 85% post-GCRA. Although the sample size is small, these preliminary findings suggest that the GCRA process addresses concerns women have regarding discrimination and confidentiality, and influences the decision to pursue GT. Nurses can assist women by providing current and accurate information about these concerns.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2002
Conference Name:
27th Annual Oncology Nursing Society Congress
Conference Host:
Oncology Nursing Society
Conference Location:
Washington, D.C., USA
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleConcerns About Insurance, Privacy/Confidentiality, and Recommendations Regarding Genetic Testing for Hereditary Breast Cancer in Womenen_GB
dc.contributor.authorMacDonald, Deborahen_US
dc.author.detailsDeborah MacDonald, City of Hope National Medical Center, Duarte, California, USAen_US
dc.identifier.urihttp://hdl.handle.net/10755/165700-
dc.description.abstractWomen presenting for genetic cancer risk assessment (GCRA) may have concerns about insurance discrimination, privacy, and confidentiality related to genetic testing (GT) for hereditary breast/ovarian cancer. These concerns may change following the GCRA process, and may differ between affected and unaffected women. In addition, the estimated probability of a woman carrying a BRCA1 or BRCA2 cancer-associated gene mutation may influence her decision regarding whether or not to undergo testing. We are measuring the impact of GCRA, through the City of Hope Cancer Screening &amp; Prevention Program Network, on women's concerns, risk perception, and management choices. Questionnaires are mailed pre- and post-GCRA to women who had a personal (affected cohort) and/or family history of breast cancer (unaffected cohort). Women were asked to report on a four-point Likert scale (1 = least important; 4 = very important) their level of concern about insurance discrimination, privacy, confidentiality, and mutation probability in deciding whether or not to undergo GT. Here, we present preliminary data for women who did not undergo GT, who responded both to the baseline and the one-month post-GCRA survey. The mean age of the affected cohort (n = 12) was 55 (range 42-67). The mean age of the unaffected cohort (n = 12) was 46 (range 31-64). Overall, prior to GCRA 63% of responders (n = 24) felt that insurance discrimination was an important reason for not getting tested. Following GCRA, only 33% of responders (n = 21) felt the same, (p = 0.05). When assessed for affected (n = 12) versus unaffected status (n = 11), this change was also significant for the unaffected women, (p = &lt;0.05). Overall, there were fewer concerns about privacy/confidentiality after GCRA for both cohorts, (p = 0.046), although there was no significant difference between the two groups. Regarding mutation probability, 91% felt that clinician &quot;recommendation&quot; for GT was important in deciding to have testing pre-GCRA and 85% post-GCRA. Although the sample size is small, these preliminary findings suggest that the GCRA process addresses concerns women have regarding discrimination and confidentiality, and influences the decision to pursue GT. Nurses can assist women by providing current and accurate information about these concerns.en_GB
dc.date.available2011-10-27T12:23:22Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T12:23:22Z-
dc.conference.date2002en_US
dc.conference.name27th Annual Oncology Nursing Society Congressen_US
dc.conference.hostOncology Nursing Societyen_US
dc.conference.locationWashington, D.C., USAen_US
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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