“Not Storing the Samples It’s Certainly Not a Good Service for Patients”: Constructing the Biobank as a Health Place
Abstract
:1. Introduction
1.1. Setting the Scene for the Emergence of Biobanks for Health and Biomedical Research
1.2. The Emergence of Portuguese Biobanks
2. Materials and Methods
3. Results
3.1. A Medical Framework to Classify Samples
“We ask the responsible researcher what kind of control he wants, and they give us the criteria of what is healthy for them. Usually, the ones that are healthy are the ones that don’t have the disease under study.” Biobank technician, Fieldnotes.
“Look, it was a sample that came supposedly from a healthy control and when I went to do the cell count, there were almost none. That person couldn’t be healthy.” Fieldnotes.
3.2. Constructing Biological Samples Identities as Being Human
During a technical procedure of processing samples, one technician says to another: “This cannot be like that, please cover the “ruizinho” [allusion to the donor’s real name] otherwise he will get a cold.” Fieldnotes.
“I do think it is humanization in the sense of transformation that sample in a human thing”. Senior Researcher, interview.
“The problem is that microbiome has human and microbial material, that’s why we need to ask two different entities for allowing us to store feces.” Biobank technical supervisor, fieldnotes.
“Here we only have human samples. The closest we have to animal samples are the tumors that we insert in rats and when they grow, they are removed [and kept in the biobank]. But this is still considered as human tissue.—Explained the biobank supervisor to a technician from another biobank who went for a visit.” Fieldnotes.
3.3. Crafting Illness Narratives
“For example, this sample, it’s not the worst sample at all, but we can see that the patient has been through chemotherapy or radiotherapy [holding a blood tube and looking carefully searching for details]. I could be wrong, but it should be something like that.” Biobank technician, Fieldnotes.
“In other cases, we have samples from a patient, and we are receiving samples and one day we realize that we are not having samples anymore from that donor and usually is not because he decided to stop giving samples, usually it’s because he died…” Biobank technician, fieldnotes.
“By the time of my first pregnancy, we were collecting samples for a study with neurotumors and neurological diseases in a pediatrics study. Sometimes I substituted the researcher in duty, doing the medical surveys to parents. I could not remember if the question was there or if it was something that parents mention spontaneously, but I remember so many parents mentioned the labor duration or situations that happen during labor…I started to put all pieces together and started wondering… how it is going to be my labor and how it could influence my child health. It was such a hard time.” Biobank technician, Fieldnotes.
“I remember exactly the person [donor]. When I start entering the data [on the computer] “Oh, this one”—because I have the social-demographic data and the profession and helps me to remember. And also, because I’m going there requesting the consent form, after I do the follow up. Then I know who they are and sometimes it’s such a pity because some of them died and I really remember them, young people, and makes me wonder…” Nurse—researcher, interview.
3.4. Taking Care of Biological Samples
“So, when we use that sample [referring to a human sample] we have the responsibility and an ethical duty of be sure what we are going to do justify the usage of that sample. We are not going to try things because we think that the research project would be more interesting.” Senior researcher, interview.
“Have you seen them? Our babies? We are creating primary cell lines! And until now they are resisting!
I must change the substrate. I am afraid they die before we finish [the cell line]. The substrate is their food, it has all the nutrients they need. They are still very sensitive; the substrate has antibiotics to prevent infection.” Biobank technician, Fieldnotes.
We went for a biobank open day. All the time the space has to be organized in order to be functional for the blood collection procedure and for the fulfilment of the medical questionnaire.
“I am going to take these chairs out of the room [said one of the biobank technicians to the other]. Doing this, the donors could wait here comfortably, and it will be look more as a waiting room.” Fieldnotes.
“Not storing the samples it’s certainly not a good service for patients.” Medical doctor, fieldnotes.
4. Discussion
5. Conclusions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
1 | Although the term donor is not consensual among the social sciences literature about biobanking, here it was chosen as it was the term commonly used by the biobank where the research was conducted. At this stage, in this particular biobank, the options regarding participation of the people entrusting their samples to the biobank, is limited not fulfilling the criteria to be considered research participants. |
2 | The Framingham Heart Study is still active, and more information could be consulted at: https://www.framinghamheartstudy.org (accessed on 16 December 2020). |
3 | The Varmland Health Survey could be consulted at: https://snd.gu.se/en/catalogue/study/ext0169 (accessed on 16 December 2020). |
4 | This legal project was proposed in 2018 in the Portuguese Parliament but has not been voted. More information about this proposal could be consulted here: https://www.parlamento.pt/ActividadeParlamentar/Paginas/DetalheIniciativa.aspx?BID=42877 (accessed on 9 June 2022) (text available only in Portuguese). |
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Riso, B. “Not Storing the Samples It’s Certainly Not a Good Service for Patients”: Constructing the Biobank as a Health Place. Societies 2022, 12, 113. https://doi.org/10.3390/soc12040113
Riso B. “Not Storing the Samples It’s Certainly Not a Good Service for Patients”: Constructing the Biobank as a Health Place. Societies. 2022; 12(4):113. https://doi.org/10.3390/soc12040113
Chicago/Turabian StyleRiso, Brígida. 2022. "“Not Storing the Samples It’s Certainly Not a Good Service for Patients”: Constructing the Biobank as a Health Place" Societies 12, no. 4: 113. https://doi.org/10.3390/soc12040113