Table 2 Themes and Sub-themes derived from the FGs analysis and related key quotes

KNOWLEDGE ABOUT PMBD

TARGET DISEASES

“I think… to study increasing diseases such as Alzheimer’s, Parkinson’s, degenerative brain diseases.”

“This research must be supported because diseases of the brain are particularly excruciating, they keep the body alive and deprive you of identity.”

SCIENTIFIC PROGRESS

“The motivation is to contribute to the scientific advancement, to knowledge, to improve quality of life.”

“Basically, to increase research, to facilitate it and help scientific progress, I think.”

ORGAN DONATION for TRANSPLANT vs. PMBD

“I don’t see any difference at this point, one can be used to save a person and the other to save, let’s say in perspective, in the future, with the research.”

“In my opinion, you can say ‘[I donate] my heart, liver, etc. because you know you are going to save a life anyway. The brain saves nothing in this case.”

INFORMATION NEEDS

BRAIN DEATH ASCERTAINMENT

“Usually, ‘brain death’ is indicated as the end, but I don’t know whether this reported ‘brain death’ is the actual brain death.”

“Does organ donation take place in a coma defined as irreversible or with brain death?”

SURGERY AND BRAIN PRESERVATION

“Having to take a piece of brain tissue, it is of no use if it is taken too late, I do not know technically…”

“I think that brain tissue can be analyzed but at the same time without deterioration…. I guess, because otherwise it would bias all the results, but this is my hypothesis”

DONOR’S PROFILE

“I knew that organs could be donated but a part of me said ‘oh yeah, but you have to be healthy because no one will take your (e.g.) ‘heart’ if you die at 80!… so maybe, no one will be able to benefit because they are no longer suitable.”

“Actually, why not donate this [brain] as well if it can be useful, I agree, but I don’t know how useful it can be if you donate at a late age.”

IMAGINARY

BRAIN USED FOR TRANSPLANT

“But to donate one’s brain and transplant it into another person who may be sick… I don’t agree, everyone is born and must die with his own brain.”

“The important thing is that my tissue, […] should be donated only to cure a certain disease. When, on the other hand, you take brain tissue … and the person who receives it has part of my brain, knows part of my life, remembers my past, [I would not agree]”.

BRAIN REMOVAL DURING LIFE

“I have a question, even though it is certainly due to my ignorance: is it possible to think about harvesting, obviously in absolutely tiny parts, the brain tissue of living people?”

BRAIN AND IDENTITY

BRAIN IS ONE’S MIND/THOUGHTS/SELF

“Not the brain! The brain is us, our deepest, most refined identity, etc. …do we really have to talk about giving a piece of brain? The brain is me.”

“One places one’s soul in the brain, one places himself, one’s identity etc. in it, so it is even more important I think than the heart itself.”

SPIRITUALITY and RELIGION

INTEGRITY OF THE BODY AFTER DEATH

“…there may be many people who do not adhere and who for religious belief demand that the body remains intact for burial.”

“I don’t know, does donating brain tissue mean keeping one’s body intact? I don’t know… “

WHAT HAPPENS AFTER DEATH?

“In my opinion, the issue here is this: what happens after death? This is the question; it is a core question in my opinion.”

PROGRESSIVE RELIGIOUS VIEW

“Cremation is now accepted, so on a religious level there is no longer [problems]”

“From a religious perspective, [there is no problem] because certainly it is not in the brain that our soul resides.”

ATTITUDE TOWARDS PMBD

PMBD AS A GIFT

“One can also say ‘I do it for others’, so it is a gift of love, if you like - donating organs or donating anything else […] is an act of love. Whether it is for a person to live or for research.”

“Spreading the culture of serving our neighbour, when we are gone, in some way contributing to the improvement of the future life of our descendants.”

UTILITARIAN VISION

“… we benefit every day from a lot of things that come from the past, from others who preceded us […] and if we are called upon to contribute to research […] that will be useful even if we don’t even know in what exact way… to some extent we have to do it…. that’s the attitude we should all have, someway”.

SUPPORTIVE ATTITUDE

“[Donating brain tissue] marks you out as a person who is, however, naturally helpful, naturally supportive. The motivation is to have general solidarity.”

“I would define the motivation [for donation] like this: knowing that the last act of my life is to do a service to science, in my opinion is an absolutely positive thing.”

BRAIN DECAY vs. BRAIN UTILIZATION

“Once that my lifecycle is over, my brain is no longer useful, how can I make it still useful? Leaving something […] can serve a good cause even afterwards.”

“We’re talking specifically about the brain but I think this applies to all organs, instead of throwing it away, it can be of help for something.”

ISSUES ELICITING NEGATIVE EMOTIONS

BRAIN DEATH “UNCERTAINTY"

“Let’s be honest, one thinks about dying and the fear, at least my personal fear, is to have an apparent death, […] this idea terrifies me, it scares me.”

“It’s definitely an emotionally challenging moment, I mean […] for the brain death assessment it happened to me to hear the relatives say: ‘what if the equipment doesn’t work properly?’

CRUELTY OF SURGERY

“To think of having [one’s head] drilled, […] this would have immediately made anyone say: I refuse!”

“It’s true […]if you take this decision they will really do it! For real, they chop you up and distribute you! That made a bit of an impression on me.”

THE THOUGHT OF DEATH

“Talking about death is like looking at the sun for too long, you can’t stare at it, you turn your face away - that’s the meaning. You can’t stare at the sun for too long. Because it’s our culture, one avoids that talk.”

“The brain has a different impact on imagination […]The moment when the relatives have to face the question of donation, they say ‘no, please, I don’t want to hear about it, because… I don’t want to think about death’.”

MENTAL DISEASE REJECTION

“Brain is a part of the body that has always been considered special […] everyone has a certain degree of reluctance to think or speak about mental diseases […] and to think about PMBD recalls mental diseases.”

FAMILY MEMBERS’ ATTITUDE

CENTRALITY OF THE DYING PERSON’S CHOICE

“If my family member [dying] had voiced his will, I would respect this will, absolutely I would never go beyond, even if I did not agree I would never go beyond his choice.”

“This situation is a complicated matter: there is no explicit consent and no explicit dissent, I have to take responsibility for another person […] I don’t know what to say.”

STRESS, GRIEF and CONCERNS

“When my mum died […] I was so disheartened, so sad, so stressed, I can even say so very angry […] and so I definitely would have said ‘no’!”

“I think that when you have a loved one dying, anyone who approaches you and tries to say anything other than ‘I’ll cure her/him’, you just kick them out, in a rude way or politely, but anyway, you kick them out.”

OPINIONS ON THE AGREEMENT TO CONSENT

“I think that all the family members should come to an agreement, when my mum died one of them could say OK, but what if the others said no?”

“I am in favor [of PMBD], also because I plan to give my consent to cremation so there is no problem. The only thing is that I would like to discuss it with my family, because I think they would have a major problem with it, certainly not me.”

“ONLY FOR A CLOSE RELATIVE?”

“In my opinion, the decision can be made only by a partner, secondarily by parents/brothers/children.”

“This issue is difficult if your own child is the dying person. I do admire those mums who consent. What courage!”

MISTRUST

“So, I might give my consent, but tomorrow whoever is in charge of implementing my will could say ‘no, I do not approve’.”

“If I have this will, if I want to make this life choice, somehow I leave it in writing, I declare it somewhere, I register it otherwise neither my daughter nor my wife nor the doctor can decide it for me, this is my point of view.”

EXPERIENCE of a NEURODEGENERATIVE DISEASE

“My dad in the end had Alzheimer’s, I think for what concerns the brain tissue if they had asked me […] I would have been more inclined [to give consent] to promote the research.”

“My experience influences me, if you talk to me about Parkinson’s you have my full attention, .my experience in these matters has much impact on me, that makes a difference.”

TRUST

RESEARCH SOUNDNESS

“On brain tissue, in my opinion, there are fears and qualms because it is seen as a different organ from the others. […] One should check the aims of such research.”

“Certainly, the aims must be made very clear!”

RESEARCH TRANSPARENCY

“I’m speaking in general, it may well be that in order to reach certain goals one can also do things that are [not perfectly clear].”

“As it has happened so many times in research, it’s not that there haven’t been cases […] Mine is just a question.”

INSTITUTION REPUTATION

“Since this request came from [an accredited institution], I didn’t worry about the question, but considering that today there are all these fake news […] if there is no information […]”

ETHICAL ASPECTS

“These are processes difficult to control, as the history has taught us how research can evolve up to very dangerous frontiers.”

“An obstacle could also be if you think that the study is not for everyone’s benefit, that the study is done to be then manipulated.”