Five facts about decisions to donate to brain banks

From a nice systematic review on this topic by Meng-Jiun Penny Lin et al: 

  1. While most people know about organ donation, it seems that most people do not know about donating to postmortem tissue banks such as brain banks. One study found: “Although all participants were aware of organ donation for transplant, they were surprised that tissue could be donated for research. Nevertheless, once they understood the concept they were usually in favor of the idea. Although participants demonstrated a general lack of knowledge on donation for research, they were willing to learn more and viewed it as a good thing, with altruistic reasons often cited as a motive for donation.”
  2. Most brain tissue is donated by people with a neurobiological illness, but all brains are valuable. This is more so the case in the era of genomics, where tools such as PrediXcan allow researchers to impute the phenotypes of genotyped individuals by leveraging relationships from reference datasets. For such a reference mapping study, brains without significant neurobiological illness can be even more valuable, because it is less confounded by pathology and therefore can be more dispositive for early disease processes where most interventions are focused.
  3. When an early brain bank was established in 1961, donating one’s brain was seen as an “act of hope.” Lin et al note that altruism continues to be the primary motivator for brain donors: “The main reported motivation of participants across all 14 studies was desire to help others. A participant expressed the donation act as ‘a tiny step forward along with other people’.”
  4. Because so often the decision to donate is made by the next of kin, previous discussions between the donor and their family regarding the topic become critical. For example, one study found that “Almost a quarter (24%) commented that they had decided to donate because they were either aware that their deceased relative had wanted to be an organ donor, or believed it was something he or she would have wanted.” These conversations can also help alleviate donor’s anxieties that their wishes will not be followed.
  5. One study found that there was an inverse relationship between how long after death the conversation about donation occurred and how likely the next of kin was to consent (p = 0.01).
    Screen Shot 2019-09-21 at 8.35.37 AM
    Garrick et al 2009, 10.1007/s10561-009-9136-1

    It was a relatively small study and the finding needs to be replicated. But if true, it speaks to how difficult conversations about the topic with next of kin can be and how allowing space for grieving is critical. On the other hand, from a brain tissue quality perspective, the lower the PMI, the less degradation will have occurred and therefore the more valuable the tissue will be for research purposes. Several of the studies had anecdotes from next of kin noting disappointment regarding the conversation they had about brain donation. This difficult conversation also needs to occur at the right health literacy of the next of kin and address any concerns they may have, such as the impact of donation on funeral practices.