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Journal of Genetic Counseling

, Volume 24, Issue 3, pp 503–511 | Cite as

Perceptions of Tissue Storage in a Dementia Population Among Spouses and Offspring

  • Megan M. MartinEmail author
  • Erin W. Rothwell
  • Vickie L. Venne
  • Norman L. Foster
PROFESSIONAL ISSUES

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.

Keywords

Dementia Surrogate Decision Making Alzheimer Disease Tissue Storage Biobank Autopsy 

Notes

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.

Supplementary material

10897_2015_9818_MOESM1_ESM.docx (102 kb)
ESM 1 (DOCX 101 kb)

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Copyright information

© National Society of Genetic Counselors, Inc. 2015

Authors and Affiliations

  • Megan M. Martin
    • 1
    Email author
  • Erin W. Rothwell
    • 2
  • Vickie L. Venne
    • 3
  • Norman L. Foster
    • 4
  1. 1.Clinical Services, Lineagen, Inc.Salt Lake CityUSA
  2. 2.University of Utah College of NursingSalt Lake CityUSA
  3. 3.Department of Veterans AffairsSalt Lake CityUSA
  4. 4.Center for Alzheimers Care, Imaging, and Research, Department of NeurologyUniversity of UtahSalt Lake CityUSA

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