Abstract
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.
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References
Axler, R. E., Irvine, R., Lipworth, W., Morrell, B., & Kerridge, I. H. (2008). Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research. Pathobiology: Journal of Immunopathology, Molecular and Cellular Biology, 75(6), 323–329. doi:10.1159/000164216.
Dunkin, J. J., & Anderson-Hanley, C. (1998). Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurology, 51(1), S53–60. discussion S65-7.
Elliott, B. A., Gessert, C. E., & Peden-McAlpine, C. (2009). Family decision-making in advanced dementia: narrative and ethics. Scandinavian Journal of Caring Sciences, 23(2), 251–258. doi:10.1111/j.1471-6712.2008.00613.x.
Garrick, T., Howell, S., Terwee, P., Redenbach, J., Blake, H., & Harper, C. (2006). Brain donation for research: who donates and why? Journal of Clinical Neuroscience: Official Journal of the Neurosurgical Society of Australasia, 13(5), 524–528. doi:10.1016/j.jocn.2005.06.014.
Glaw, X. M., Garrick, T. M., Terwee, P. J., Patching, J. R., Blake, H., & Harper, C. (2009). Brain donation: who and why? Cell and Tissue Banking, 10(3), 241–246. doi:10.1007/s10561-009-9121-8.
Graeber, M. B., Kosel, S., Grasbon-Frodl, E., Moller, H. J., & Mehraein, P. (1998). Histopathology and APOE genotype of the first Alzheimer disease patient, Auguste D. Neurogenetics, 1, 223–228.
Grunfeld, E., Coyle, D., Whelan, T., Clinch, J., Reyno, L., Earle, C. C., Willan, A., Viola, R., Coristine, M., Janz, T., & Glossop, R. (2004). Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ, 170(12), 1795–801.
Hawkins, A. K. (2010). Biobanks: importance, implications and opportunities for genetic counselors. Journal of Genetic Counseling, 19(5), 423–429. doi:10.1007/s10897-010-9305-1.
Hiraki, S., Chen, C. A., Roberts, J. S., Cupples, L. A., & Green, R. C. (2009). Perceptions of familial risk in those seeking a genetic risk assessment for Alzheimer’s disease. Journal of Genetic Counseling, 18(2), 130–136. doi:10.1007/s10897-008-9194-8.
Hoop, J. G., Roberts, L. W., & Hammond, K. A. G. (2009). Genetic testing of stored biological samples: views of 570 U.S. workers. Genetic Testing and Molecular Biomarkers, 13(3), 331–337. doi:10.1089/gtmb.2008.0117.
Hurley, A. C., Harvey, F. R., Roberts, J. S., Wilson-Chase, C., Lloyd, S., Prest, J., & Green, R. C. (2005). Genetic susceptibility for Alzheimer’s disease: why did adult offspring seek testing? American Journal of Alzheimer's Disease and Other Dementias, 20(6), 374–381.
Kettis-Lindblad, A., Ring, L., Viberth, E., & Hansson, M. G. (2006). Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? European Journal of Public Health, 16(4), 433–440. doi:10.1093/eurpub/cki198.
Kim, S. Y. H., Kim, H. M., McCallum, C., & Tariot, P. N. (2005). What do people at risk for Alzheimer disease think about surrogate consent for research? Neurology, 65(9), 1395–1401. doi:10.1212/01.wnl.0000183144.61428.73.
Lambert, J.-C., Ibrahim-Verbaas, C. A., Harold, D., Naj, A. C., Sims, R., Bellenguez, C., & Beecham, G. W. (2013). Meta-analysis of 74,046 individuals identifies 11 new susceptibility loci for Alzheimer’s disease. Nature Genetics, Advance Online Publication. doi:10.1038/ng.2802.
Linnenbringer, E., Roberts, J. S., Hiraki, S., Cupples, L. A., & Green, R. C. (2010). “I know what you told me, but this is what I think:” perceived risk of Alzheimer disease among individuals who accurately recall their genetics-based risk estimate. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 12(4), 219–227. doi:10.1097/GIM.0b013e3181cef9e1.
MacLeod, R., Beach, A., Henriques, S., Knopp, J., Nelson, K., & Kerzin-Storrar, L. (2014). Experiences of predictive testing in young people at risk of Huntington's disease, familial cardiomyopathy or hereditary breast and ovarian cancer. European Journal of Human Genetics, 22(3), 396–401.
Meiser, B., & Dunn, S. (2001). Psychological effect of genetic testing for Huntington’s disease: an update of the literature. The Western Journal of Medicine, 174(5), 336–340.
Muller, U., Winter, P., & Graeber, M. B. (2011). Alois Alzheimer's case, Auguste D., did not carry the N141I mutation in PSEN2 characteristic of Alzheimer disease in Volga Germans. Archives of Neurology, 68, 1210–1211. author reply.
Neidich, A. B., Joseph, J. W., Ober, C., & Ross, L. F. (2008). Empirical data about women’s attitudes towards a hypothetical pediatric biobank. American Journal of Medical Genetics Part A, 146(3), 297–304. doi:10.1002/ajmg.a.32145.
Oosterhuis, J. W., Coebergh, J. W., & van Veen, E.-B. (2003). Tumour banks: well-guarded treasures in the interest of patients. Nature reviews. Cancer, 3(1), 73–77. doi:10.1038/nrc973.
Peterson, S. K., Watts, B. G., Koehly, L. M., Vernon, S. W., Baile, W. F., Kohlmann, W. K., & Gritz, E. R. (2003). How families communicate about HNPCC genetic testing: findings from a qualitative study. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 119C(1), 78–86.
Riegman, P. H. J., Morente, M. M., Betsou, F., De Blasio, P., Geary, P., & Marble Arch International Working Group on Biobanking for Biomedical Research. (2008). Biobanking for better healthcare. Molecular Oncology, 2(3), 213–222. doi:10.1016/j.molonc.2008.07.004.
Roberts, J. S. (2000). Anticipating response to predictive genetic testing for Alzheimer’s disease: a survey of first-degree relatives. The Gerontologist, 40(1), 43–52.
Strecher, V.J., and Rosenstock, I.M. (1997). The Health Belief Model. Health Behavior and Health Education: Theory, Research, and Practice
Thies, W., Bleiler, L., & Alzheimer’s Association. (2013). Alzheimer’s disease facts and figures. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 9(2), 208–245. doi:10.1016/j.jalz.2013.02.003.
Trippitelli, C. L., Jamison, K. R., Folstein, M. F., Bartko, J. J., & DePaulo, J. R. (1998). Pilot study on patients’ and spouses’ attitudes toward potential genetic testing for bipolar disorder. American Journal Psychiatry, 155(7), 899–904.
Wang, S. S., Fridinger, F., Sheedy, K. M., & Khoury, M. J. (2001). Public attitudes regarding the donation and storage of blood specimens for genetic research. Community Genetics, 4(1), 18–26.
Williamson, J., Goldman, J., & Marder, K. S. (2009). Genetic aspects of Alzheimer disease. The Neurologist, 15(2), 80–86. doi:10.1097/NRL.0b013e318187e76b.
Zatloukal, K., & Hainaut, P. (2010). Human tissue biobanks as instruments for drug discovery and development: impact on personalized medicine. Biomarkers in Medicine, 4(6), 895–903. doi:10.2217/bmm.10.104.
Acknowledgments
The author would like to thank the staff at the University of Utah Imaging and Neurosciences Center for their assistance in recruitment for this study and all the participants that made this study possible. This manuscript is based on a research project conducted by Megan Martin in 2011 to fulfill the requirements of the University of Utah master’s degree in Genetic Counseling.
Conflict of Interest
Megan Martin, Erin Rothwell, Vickie Venne, and Norman Foster declare that they have no conflict of interest.
Informed Consent
The University of Utah’s IRB approved this study prior to any recruitment (IRB# 00,041,055). All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
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Martin, M.M., Rothwell, E.W., Venne, V.L. et al. Perceptions of Tissue Storage in a Dementia Population Among Spouses and Offspring. J Genet Counsel 24, 503–511 (2015). https://doi.org/10.1007/s10897-015-9818-8
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DOI: https://doi.org/10.1007/s10897-015-9818-8