Families’ reflections on the process of brain donation following coronial autopsy

Sundqvist, Nina; Garrick, Thomas; Harding, Anthony John

doi:10.1007/s10561-010-9233-1

Cited by 15 publications

(27 citation statements)

References 20 publications

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“…Much of what is already known about this comes from Australian research that evaluated the responses of next-of-kin to a telephone request made on the day of the necropsy to donate the brain of the deceased (Azizi et al 2006;Garrick et al 2009;Sundqvist et al 2012).…”

Section: Discussionmentioning

confidence: 99%

“…In the sample studied, 12.5 % of relatives who refused did so because they knew the deceased person's express wish. In a study carried out with relatives who consented to the brain donation, Sundqvist et al (2012) showed that 44 % did not discuss this topic with the deceased person in life, but they identified higher consent rates among families who had previously discussed the topic with their family members and knew their wishes. These findings highlight the importance of discussion of donations with the family and the promotion of positive attitudes toward donation.…”

Section: Discussionmentioning

confidence: 99%

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Assessing families’ and patients’ attitudes toward brain donation for research purposes in a Brazilian population sample

et al. 2014

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The neuropathological examination of postmortem human brain tissue is an essential resource for the definitive diagnosis and research on neurodegenerative diseases. Due to the growing need of donated brains to supply the Brain Banks, the understanding of the factors associated with the consent for the donation in our context is an important aspect of the process of brain donation. The verbal answers and the donation consent rate were evaluated in three groups: 30 relatives of patients who underwent verification of the cause of death, 14 patients assisted at a neurology ambulatory outpatient clinic, and 18 patients' relatives. The donation consent rates were of 46.6, 92.8 and 88.8 %, respectively. The main reasons for refusal were the disagreement with the autopsy, philosophical and religious issues, objections from other family members, and the consideration of the wishes of the deceased. The consent was specially motivated by the interest in the advances of scientific knowledge, altruistic reasons and the personal experiences with the disease. Factors as the emotional fragility at the moment of death, the beliefs, family matters, and the lack of knowledge are key elements in the donation process. Future goals include the establishment of a brain donor program with the support of academic institutions, hospitals, scientists, community, patient's associations and autopsy assistants. Approaching patients and relatives in specialized ambulatories clinic during assistance is probably the most efficient mean of obtaining brains for research.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Assessing families’ and patients’ attitudes toward brain donation for research purposes in a Brazilian population sample

et al. 2014

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“…An Australian study noted that only 24% of families gave their primary reason for agreeing to brain donation as respect for their deceased relative's wishes 5. This undermines the validity of family as substitute decision-makers after death for patients with schizophrenia.…”

Section: Discussionmentioning

confidence: 99%

Postmortem brain donation and organ transplantation in schizophrenia: what about patient consent?: Figure 1

Strous¹,

Bergman-Levy²,

Greenberg³

2012

J Med Ethics

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In patients with schizophrenia, consent postmortem for organ donation for transplantation and research is usually obtained from relatives. By means of a questionnaire, the authors investigate whether patients with schizophrenia would agree to family members making such decisions for them as well as compare decisions regarding postmortem organ transplantation and brain donation between patients and significant family members. Study results indicate while most patients would not agree to transplantation or brain donation for research, a proportion would agree. Among patients who declined organ donation for transplantation or brain research, almost half of family members would have agreed to brain donation for research and over 40% to organ transplantation. Male relatives are more likely to agree to organ donation from their deceased relatives for both transplantation and research. The authors argue that it is important to respect autonomy and interests of research subjects even if mentally ill and even if no longer living. Consent may be assisted by appropriate educational interventions prior to patient death.

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“…At least one study regarding success with on-the-spot, “cold-call”, medical examiner brain donations from next-of-kin in Caucasian samples has also been described by the New South Wales Tissue Resource Centre, where approximately 54% of families that were approached consented to brain donation [18] for psychiatric, substance abuse, and neurological disorders. In this same brain donation program of Caucasian brain donation samples, being future organ/transplant donors in other programs [19], or having prior conversations with loved ones about brain/organ donation before their death [20] were positively associated with brain donation.…”

Section: Introductionmentioning

confidence: 99%

African-American and Caucasian participation in postmortem human brain donation for neuropsychiatric research

et al. 2019

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Increased African-American research participation is critical to the applicability and generalizability of biomedical research, as population diversity continues to increase both domestically and abroad. Yet numerous studies document historical origins of mistrust, as well as other barriers that may contribute to resistance in the African-American community towards participation in biomedical research. However, a growing body of more recent scientific evidence suggests that African-Americans value research and are willing to participate when asked. In the present study, we set out to determine factors associated with research participation of African-American families in postmortem human brain tissue donation for neuropsychiatric disorders as compared with Caucasian families, from same-day medical examiner autopsy referrals. We retrospectively reviewed brain donation rates, as well as demographic and clinical factors associated with donation in 1,421 consecutive referrals to three medical examiner’s offices from 2010–2015. Overall, 69.7% of all next-of-kin contacted agreed to brain donation. While Caucasian families consented to donate brain tissue at a significantly higher rate (74.1%) than African-American families (57.0%) (p<0.001), African-American brain donation rates were as high as 60.5% in referrals from Maryland. Neither African-American nor Caucasian donors differed significantly from non-donors on any demographic or clinical factors ascertained, including age, sex, diagnosis of the donor, or in the relationship of the next-of-kin being contacted (p>0.05). However, Caucasian donors were significantly older, had more years of education, were more likely to be referred for study due to a psychiatric diagnosis, more likely to have comorbid substance abuse, and more likely to have died via suicide, as compared with African-American donors (p<0.05). When African-American participants are identified and approached, African-American families as well as Caucasian families are indeed willing to donate brain tissue on the spot for neuropsychiatric research, which supports the belief that African-American attitudes towards biomedical research may be more favorable than previously thought.

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Families’ reflections on the process of brain donation following coronial autopsy

Cited by 15 publications

References 20 publications

Assessing families’ and patients’ attitudes toward brain donation for research purposes in a Brazilian population sample

Assessing families’ and patients’ attitudes toward brain donation for research purposes in a Brazilian population sample

Postmortem brain donation and organ transplantation in schizophrenia: what about patient consent?: Figure 1

African-American and Caucasian participation in postmortem human brain donation for neuropsychiatric research

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