2.50
Hdl Handle:
http://hdl.handle.net/10755/161606
Type:
Presentation
Title:
Preferences of Family Members for Genotyping Contact and Informed Consent
Abstract:
Preferences of Family Members for Genotyping Contact and Informed Consent
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2002
Author:Herrick, Linda
P.I. Institution Name:Mayo Clinic
Title:Nurse Researcher
Contact Address:200 First Street, SW, Rochester, MN, 55905, USA
Contact Telephone:507.284.2511
Genotyping of individuals often reveals genetic mutations predictive of disease. Since genetic information is inherently familial, the process of obtaining genetic information and mapping genetic polymorphisms and mutations often requires contacting family members to encourage their participation in genetic studies. Current practices commonly include asking the index individual to identify family members and then direct contact of family members by the researcher. Issues of autonomy and privacy have been raised in relation to asking the individual to share such information with the researcher and family members, but little information is available regarding the general public's understanding and opinion of these issues. Principles of autonomy and issues of confidentiality serve as the framework for this study. Using a semi-structured interview, families of ten randomly selected patients were surveyed for this pilot study. Questions were asked about knowledge of genotyping studies and preferences of informed consent methods. Interview tapes were transcribed and quantitative and qualitative analyses conducted. Results suggest limited knowledge about genetic studies with main sources of knowledge being the popular press and television. The main concern was the potential negative effect of results on insurance coverage although respondents reported that they would participate despite the concern if it would help family members. The preferred method of family contact was to have the individual contact family members, request permission to share their name and contact information with the researcher, and then have the researcher contact family members in order to explain the study. Respondents did not identify the commonly expressed concern of researchers about having knowledge of family members' names and linkages to the index case and, therefore the genetic makeup of family members. This pilot work provides information on which to base further research, and has implications for educational efforts and public policy.
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.titlePreferences of Family Members for Genotyping Contact and Informed Consenten_GB
dc.identifier.urihttp://hdl.handle.net/10755/161606-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Preferences of Family Members for Genotyping Contact and Informed Consent</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">2002</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Herrick, Linda</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">Mayo Clinic</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Nurse Researcher</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">200 First Street, SW, Rochester, MN, 55905, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">507.284.2511</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">herrick.linda@mayo.edu</td></tr><tr><td colspan="2" class="item-abstract">Genotyping of individuals often reveals genetic mutations predictive of disease. Since genetic information is inherently familial, the process of obtaining genetic information and mapping genetic polymorphisms and mutations often requires contacting family members to encourage their participation in genetic studies. Current practices commonly include asking the index individual to identify family members and then direct contact of family members by the researcher. Issues of autonomy and privacy have been raised in relation to asking the individual to share such information with the researcher and family members, but little information is available regarding the general public's understanding and opinion of these issues. Principles of autonomy and issues of confidentiality serve as the framework for this study. Using a semi-structured interview, families of ten randomly selected patients were surveyed for this pilot study. Questions were asked about knowledge of genotyping studies and preferences of informed consent methods. Interview tapes were transcribed and quantitative and qualitative analyses conducted. Results suggest limited knowledge about genetic studies with main sources of knowledge being the popular press and television. The main concern was the potential negative effect of results on insurance coverage although respondents reported that they would participate despite the concern if it would help family members. The preferred method of family contact was to have the individual contact family members, request permission to share their name and contact information with the researcher, and then have the researcher contact family members in order to explain the study. Respondents did not identify the commonly expressed concern of researchers about having knowledge of family members' names and linkages to the index case and, therefore the genetic makeup of family members. This pilot work provides information on which to base further research, and has implications for educational efforts and public policy.</td></tr></table>en_GB
dc.date.available2011-10-26T23:24:09Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T23:24:09Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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