Abstract
This study sheds light on the attitudes and circumstances that influence decisions by families to donate the brain of a deceased family member for research. This study, a part of the Genotype-Tissue Expression (GTEx) project, interviewed families of patients who had authorized organ and/or tissue donation for transplantation. A total of 384 family decision makers (FDMs) who decided to donate organs and/or tissues for transplantation were also asked to donate to GTEx. Of these, 297 families were asked to donate their loved one’s whole brain and 87 families responded to a hypothetical request for brain donation. The decision to donate the brain to GTEx, actually or hypothetically, was the major outcome measure. The majority of the FDMs would choose to donate the brain, 78%. Unwillingness to donate the brain was associated with four attitudes: (1) the FDM unwillingness to donate their own tissues for research (OR 1.91, 95% CI .67 to 2.96; p = .05), (2) concern with potential for-profit use of tissues (OR 2.12, 95% CI 1.2 to 3.7; p = .008), (3) reported squeamishness about tissue donation (OR 1.34, 95% CI 1.1 to 1.7; p = .006), and (4) belief that FDMs should have a say in how the donated tissues are used (OR 1.36, 95% CI 1.13 to 1.5; p = .01). Organ and tissue donors may present a plenteous source of brains for research. Family concerns about tissue use and collection should be addressed by requesters.
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Acknowledgements
The ELSI project acknowledges the work of the GTEx OPO partners: Gift of Life in Philadelphia, PA; Center for Organ Recovery and Education in Pittsburg, PA; LifeNet Health in Virginia Beach, VA; Washington Regional Transplant Center in Washington DC; and LifeGift in Houston TX. The authors also thank the participants for their assistance in this project.
Funding
This work was supported by the National Institutes of Health (Contract No. HHSN261200800001E—Leidos Prime contract with National Cancer Institute) and the National Disease Research Interchange (Contract No. 10XS170).
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Appendices
Appendix A
Tissue donation attitude questions
Biobanks are useful even if they only produce more scientific knowledge and not medical advancement |
Tissue donation makes something positive come out of death |
The idea of tissue donation makes me feel squeamish and uncomfortable |
Genetic research will improve our lives |
Policy makers should consider the possibility that the U.S. should not pursue biobanking |
Donors should share in any money that is made through research on donated tissues |
Educating people about health issues (e.g., diet and lifestyle changes) promises greater health benefits than investing in biobanks |
Donors should be able to have a say in deciding what the donated tissues will be used for |
It’s o.k. for tissues donated in the U.S. to be sent to other countries for research purposes |
It is acceptable to do research on personally identifiable samples without permission |
Donors should always be able to withdraw their sample from research at any time |
Donors should have property rights to the tissues donated |
Donors should be contacted every time researchers want to use the donated tissues for research so they consent to the specific study |
Researchers should be allowed to use samples for research but they should not own them |
Scientists can be trusted to have access to all unidentified, personal tissue samples for research |
Donors should have access to the results of DNA testing done on their tissue samples |
Donors should have access to results that could impact their families’ health |
Appendix B
Tissue donation discussion topics
The tissue samples from the patient are for research related purposes |
Storage of the samples for an indefinite period of time |
Establishment of a DNA database for researchers to use for genetic research |
Development of cell lines that can be made to grow forever/indefinitely |
Right to decline participation |
Right to withdraw DNA and medical information after you have donated |
Information about whom to contact to withdraw consent |
Information about whom to contact with questions or concerns |
Use of DNA and medical records to study various diseases |
That it will not be known in advance the specific studies the donated tissue might be used for |
Ability to consent to donation of specific types of tissue |
Consent to medical record review |
No direct benefits of participation |
Risk to family associated with release of genetic information |
No cost associated with donation |
Tissue samples, including DNA and medical record information, may be made available to for-profit companies |
Specific diseases that could be cured or treated by biobanking research |
Law enforcement or other legal entities ability to access biobanking information |
The use of samples in cloning or stem cell research |
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Siminoff, L.A., Mash, D., Wilson-Genderson, M. et al. Making a family decision to donate the brain for genomic research: lessons from the genotype-tissue expression project (GTEx). Cell Tissue Bank 22, 431–441 (2021). https://doi.org/10.1007/s10561-020-09890-9
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DOI: https://doi.org/10.1007/s10561-020-09890-9