Abstract
This chapter brings in the final perspective to scientific craftwork, which is the role of patients as voluntary donors of original tissue. It explores how cell-based disease modelling ultimately lies with patients’ and healthy controls’ willingness to take part in biomedical research. This act of donation ties in the threads of clinical translation and laboratory experimentation discussed in the earlier chapters of the book, illustrating important differences in donor and researcher rationales as it comes to the future uses of human tissue in research. Applying again the concept of instrumentality-care continuum, the chapter shows that as patients are enrolled in scientific craftwork, they enact personal ethical and epistemic ideas and emotional investments of what goes into the craft of biomedical research.
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Notes
- 1.
For helpful reviews on the debates on the moral status of embryo and ethical premises of destroying embryos for research purposes, see, for example , Baylis and Krahn (2009), Caulfield and Chapman (2005), Hyun (2008a, b), Thompson (2013), and Watt and Kobayashi (2010). Procurement of oocytes and embryos for scientific purposes has raised notable scholarly discussion also in the case of India (e.g. Bharadwaj and Glasner 2009; Gupta 2011) and the Asian countries (e.g. Kato and Sleeboom-Faulkner 2013; Liu 2011; Tsuge and Hong 2011).
- 2.
This shift manifests in stakeholders from scientists themselves to policymakers and patient organizations speaking for the preference of creating human pluripotent stem cells through the use of donated adult cells such as fibroblasts , rather than through the use of human embryos (e.g. Caulfield and Chapman 2005; Hyun 2008b; Thompson 2013, and Watt and Kobayashi 2010). It must be noted, though, that while the publishing of iPS cells caused a general rush of approval, many commentators both inside and outside the field of stem cell science warned of “overhype” and raised the concern that also iPS cells involved unresolved old and new issues of risk governance and research ethics due to which research and regulation on hES cells should not be considered redundant (e.g. Cyranoski 2008; Gottweis and Minger 2008; Hyun 2008a; Zarzeczny et al. 2009).
- 3.
For an intriguing study about “humanitarian handicrafts” and how particularly elderly women take part in the practice of global care through humanitarian projects, see Liisa Malkki’s (2015) book The Need to Help. There are clear similarities between Malkki and my informant’s accounts about taking part in and collaborating with rather distant and even abstract global projects through the concrete sensibilities of materials and craft.
- 4.
I am thankful for Karoliina Snell for pressing this point to me in the early version of the chapter.
- 5.
The impetus to commercialize collected biospecimens and advance the development of human biological material into marketable products has given rise to scholarly discussions and debates on whether donors should be allowed to retain rights to their donations in the form of control of distribution and even to take part in benefit-sharing of pharmaceutical value production (e.g. Cooper and Waldby 2014; Dickenson 2007; Hayden 2007; Hoeyer 2013; Scheper-Hughes 2008).
- 6.
I received a list of names and telephone numbers or e-mail addresses of those who had agreed to be contacted, altogether ten women and five men (nine patients and six controls). I was able to get hold of 12 of them; however, two men cancelled before the interview and asked to withdraw from this study. All the informants received an information sheet of my study and additional oral information before the interviews took place. Each of them also signed an informed consent form which states that participation is voluntary, the interviewee has the right to decline the interview and to withdraw her/his consent at any time without specifying the reason, and attending this study does not affect their medical treatment in any way. The consent form also states that the data is anonymized and the information given in the interviews is confidential and will be handled as such.
- 7.
To guarantee as much anonymity as possible, I disclose only selected information about the age, individual disease history, and the occupational backgrounds of these informants.
- 8.
Cardiac cells consist of cardiac myocytes, cells of conductive system, smooth muscle cells, and endothelial cells (Moretti et al. 2013).
- 9.
The report is based on responses given by 1056 individuals to a postal survey carried out during the summer of 2016. The survey population included all 18–70-year-olds in Finland (Finnish Science Barometer 2016).
- 10.
Trust in biomedical research shows also in Finnish people’s willingness to participate in biobanking and the type of informed consent that people prefer. According to a Pan-European study (Gaskell et al. 2013), people in Northern Europe, and particularly in the Netherlands and Finland, are most relaxed about the issue of informed consent, willing to opt for a broad consent if asked to donate for a biobank.
- 11.
Previous research on the drafting process of the Advanced Therapy Medicinal Product (ATMP) Regulation in the EU , discussed in Part I of the book, has suggested that the process involved a conscious decision to exclude ethically sensitive issues from the regulation (Trommelmans et al. 2007). The European Commission requested an opinion on the ethical issues from the European Group on Ethics (EGE) as part of the impact assessment that accompanies each directive. The opinion produced by the EGE took up the issues of informed consent, commercialization of body parts, privacy protection, and the use of embryonic stem cells , among others, considering it necessary to address these issues in the planned regulation. However, in the proposal for the ATMP Regulation, the ethical issues were reduced to voluntary and unpaid donation of cells, which was considered already covered by the EU Tissues and Cells Directive (Trommelmans et al. 2007). In the final version of the Regulation, value-laden issues explicitly mentioned were public safety, facilitation of the pharmaceutical market , and free and voluntary donation. The legislative act explicitly evades the complex issue of commercialization of altruistically donated material and leaves this issue to be dealt with by the member states (Pirnay et al. 2013; Mansnérus 2015).
- 12.
A good summary of early discussions organized by the International Society for Stem Cell Research on how the iPS cell technology brings up both old questions of privacy, intellectual property rights, and regulation of research as well as new problems concerning informed consent, reproductive materials, and clinical translation can be found in Zarzeczny et al. (2009).
- 13.
By the current Biobank Act (688/2012), Finnish regulators allow for the setting up of biobanks based on sample donors’ consent. The Act states: “a person may issue consent for the storing of the samples taken or soon to be taken from him or her in a biobank and their use in biobank research, the provision of his or her personal information, the linking of register data concerning him or her and other processing of the samples and information obtained from him or her in connection with the samples to the extent required by biobank research. The consent shall be given in writing.” This regulation also decrees that the donor has a right to, at any point, cancel the consent, prohibit the use of the sample for research purposes, or impose restrictions for its use.
- 14.
Contractual documents called Material Transfer Agreements are commonly used to govern and facilitate the exchange and use of cell lines between scientists and for-profit or non-profit institutions. For an example of an iPS cell line related agreement, see WiCell MTA iPS (2012).
- 15.
The HeLa cell line was generated from the tumor biopsy of a poor African American tobacco farmer called Henrietta Lacks, without her knowledge or permission in 1951. Treated at the Johns Hopkins Hospital for cervical cancer, Lacks died at the age of 31, but the tissue samples from her tumor were used by Dr. George Gey, head of tissue culture research at Hopkins, to create the first immortalized cell line. A continuously dividing line of cancer cells, the HeLa cell line is still used today. It has invoked much discussion on race, ethics of biomedical research , and patients’ role in advancing science, particularly after the publication of The Immortal Life of Henrietta Lacks by Rebecca Skloot (2010).
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Meskus, M. (2018). Patients and the Material Origins of Knowledge. In: Craft in Biomedical Research. Palgrave Macmillan, New York. https://doi.org/10.1057/978-1-137-46910-6_6
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