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Patient and genetics healthcare provider attitudes regarding recontact

O'Connor, Michelle (2014) Patient and genetics healthcare provider attitudes regarding recontact. Master's Thesis, University of Pittsburgh. (Unpublished)

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As genetic testing technologies continue to evolve, new opportunities for cancer risk assessment and prevention may become available. Because of this, it is necessary to evaluate the process of patient recontact for the purpose of offering additional genetic testing. Limited information exists regarding patients’ expectations and preferences for recontact by their genetics providers. In addition, there is limited literature exploring the current practice of recontact by genetics providers and attitudes regarding the duty to recontact patients. This study evaluated both patient and genetics providers’ attitudes regarding recontact. Questionnaires were sent to 1000 patients previously tested for BRCA1/2 between the years 2007-2012 at the UPMC Cancer Genetics Program that inquired about their expectations and preferences for recontact. Questionnaires were also sent to 490 members of the National Society of Genetic Counselors Cancer Risk Assessment Special Interest Group that inquired about current practice of patient recontact and attitudes regarding clinical practice guidelines and ethical responsibility to recontact patients. This study found that patients believed that their genetics providers hold more responsibility to keep patients updated about new genetic discoveries than other providers and the patients themselves. The data supports that patients’ preferences for recontact include personalized information only when new information is discovered and preferences were not influenced by genetic testing results. In addition, the study found that genetics providers believe there is some ethical duty to keep patients informed of new genetic information, and the majority of providers have previously recontacted patients for this purpose, but do not have formalized systems of recontact established. Resources, such as staff, monetary support, and database access were found to influence the practice of recontact by genetics providers, and the data suggests that database access is a significant component for genetics providers to have established systems of recontact. The majority of genetics providers did not believe patient recontact should be standard of care, however, desired clinical practice guidelines. This research is significant to the field of public health as it clarified patient expectations regarding recontact and has implications that may aid in the development of recontacting strategies for genetics providers.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
O'Connor, Michelle
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Thesis AdvisorThull, Darcy
Committee ChairBarmada, M Michaelbarmada@pitt.eduBARMADA
Committee ChairModugno,
Date: 27 June 2014
Date Type: Publication
Defense Date: 31 March 2014
Approval Date: 27 June 2014
Submission Date: 3 April 2014
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 115
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: Recontact HBOC BRCA1/2 Cancer Genetics Cancer Genetic Counseling
Date Deposited: 27 Jun 2014 21:45
Last Modified: 15 Nov 2016 14:18


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