The Human Genome Project: What does it mean for families who have children with genetic-related disabilities?

2.50
Hdl Handle:
http://hdl.handle.net/10755/161472
Type:
Presentation
Title:
The Human Genome Project: What does it mean for families who have children with genetic-related disabilities?
Abstract:
The Human Genome Project: What does it mean for families who have children with genetic-related disabilities?
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2003
Author:Miller, Virginia
Contact Address:4325 Brush Street Room 121, Shiffman Medical Library, Detroit, MI, 48201, USA
Little is known about what families who have children with genetic-related disabilities know about the Human Genome Project. Less is known about their perceptions and attitudes toward the Human Genome Project. The purpose of this study was to learn what families who have children with genetic-related disabilities know and how they perceive the implications of the Human Genome Project on their family's health and health care. A survey instrument in a case scenario format was developed focusing on prenatal genetic testing, new treatments/cures, changing employment and insurance coverage, and genetic testing for young adult siblings of children with genetic-related disabilities. Parents were recruited to participate in an interview from a variety of settings, including parent support group meetings and genetics clinics at a children's hospital. Twenty-seven parents of children with genetic-related disabilities participated in the study interview. The ages of the children ranged from 1 through 18 years and a wide range of genetic conditions were represented. The responses to the case scenarios included questions regarding where the parents learned their information. Parents identified that they learned their information from personal experiences, support groups, broad-based media sources, and personal experiences. This presentation will include the findings related to each of the case scenario questions as well as implications for educational strategies to assist families in decision-making regarding the family and health care implications of the Human Genome Project. AN: MN030347
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.titleThe Human Genome Project: What does it mean for families who have children with genetic-related disabilities?en_GB
dc.identifier.urihttp://hdl.handle.net/10755/161472-
dc.description.abstract<table><tr><td colspan="2" class="item-title">The Human Genome Project: What does it mean for families who have children with genetic-related disabilities? </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">2003</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Miller, Virginia</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">4325 Brush Street Room 121, Shiffman Medical Library, Detroit, MI, 48201, USA</td></tr><tr><td colspan="2" class="item-abstract">Little is known about what families who have children with genetic-related disabilities know about the Human Genome Project. Less is known about their perceptions and attitudes toward the Human Genome Project. The purpose of this study was to learn what families who have children with genetic-related disabilities know and how they perceive the implications of the Human Genome Project on their family's health and health care. A survey instrument in a case scenario format was developed focusing on prenatal genetic testing, new treatments/cures, changing employment and insurance coverage, and genetic testing for young adult siblings of children with genetic-related disabilities. Parents were recruited to participate in an interview from a variety of settings, including parent support group meetings and genetics clinics at a children's hospital. Twenty-seven parents of children with genetic-related disabilities participated in the study interview. The ages of the children ranged from 1 through 18 years and a wide range of genetic conditions were represented. The responses to the case scenarios included questions regarding where the parents learned their information. Parents identified that they learned their information from personal experiences, support groups, broad-based media sources, and personal experiences. This presentation will include the findings related to each of the case scenario questions as well as implications for educational strategies to assist families in decision-making regarding the family and health care implications of the Human Genome Project. AN: MN030347 </td></tr></table>en_GB
dc.date.available2011-10-26T23:21:54Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T23:21:54Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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