caa a22 4500 605544549 CHVBK 20210128100932.0 cr unu---uuuuu 210128e20150601xx s 000 0 eng 10.1007/s10897-015-9818-8 doi (NATIONALLICENCE)springer-10.1007/s10897-015-9818-8 Perceptions of Tissue Storage in a Dementia Population Among Spouses and Offspring [Elektronische Daten] [Megan Martin, Erin Rothwell, Vickie Venne, Norman Foster] Cognitively impaired patients with dementia often rely on health advocates or guardians, such as spouses or adult offspring, to consent for medical procedures. These family members may also decide whether an autopsy is performed after death or whether their family member donates tissues. However, spouses are not genetically related to the patient and may have different perspectives than genetically related family members when making medical decisions with genetic implications, such as participation in a tissue repository (biobank). Interviews were conducted with spouses and adult offspring of individuals with a progressive dementing disease. Both spouses and offspring were supportive of the patient with dementia to participate in tissue storage. The top perceived benefits of tissue storage in both offspring and spouses were future value for family members and advancement of medical knowledge. Concerns included misuse of the tissue and insurance discrimination. Although the personal genetic implications differ between spouses and offspring, they share similar attitudes about the importance of tissue banking for the individual with a dementing disease. National Society of Genetic Counselors, Inc., 2015 Dementia nationallicence Surrogate Decision Making nationallicence Alzheimer Disease nationallicence Tissue Storage nationallicence Biobank nationallicence Autopsy nationallicence Martin Megan Clinical Services, Lineagen, Inc., 2677 E Parleys Way, 84109, Salt Lake City, UT, USA aut Rothwell Erin University of Utah College of Nursing, Salt Lake City, UT, USA aut Venne Vickie Department of Veterans Affairs, Salt Lake City, UT, USA aut Foster Norman Center for Alzheimers Care, Imaging, and Research, Department of Neurology, University of Utah, Salt Lake City, UT, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 503-511 1059-7700 24:3<503 2015 24 10897 https://doi.org/10.1007/s10897-015-9818-8 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-015-9818-8 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Martin Megan Clinical Services, Lineagen, Inc., 2677 E Parleys Way, 84109, Salt Lake City, UT, USA aut NATIONALLICENCE 700 1- Rothwell Erin University of Utah College of Nursing, Salt Lake City, UT, USA aut NATIONALLICENCE 700 1- Venne Vickie Department of Veterans Affairs, Salt Lake City, UT, USA aut NATIONALLICENCE 700 1- Foster Norman Center for Alzheimers Care, Imaging, and Research, Department of Neurology, University of Utah, Salt Lake City, UT, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 503-511 1059-7700 24:3<503 2015 24 10897