Dr Emma King - NMAHP-RU, University of Stirling
Dr Rebecca Dimond - Cardiff University School of Social Sciences
Dr Cathy Herbrand - VC2020 Lecturer, De Montfort University, Leicester, Dr Nicky Hudson - Reader in Medical Sociology, De Montfort University, Leicester
Patricia Mahon-Daly PhD - Principal Lecturer, Faculty of Society & Health, Department of Social Sciences and Applied Education
Charlotte McLachlan - Imperial College London, Gemma Petts - Imperial College London, Department of Medicine
Preface
In the twenty first century, it seems that the body parts, tissue and fluids that can be donated are limitless, and the purposes for donation have extended beyond our imaginations. We can donate milk teeth, urine and tears to art exhibitions such as Palaces or Museum of Water, which have prompted researchers to consider the ethics of these donations as illustrated by the project titled Trust me I’m an artist. When we look at how we make sense of ‘donation’ in the 21st century, we are right to question if the ideas, themes and approaches from the past still apply to how donation is practiced today.
As researchers in the field of donation, we have become entrenched in the same dialogue. The act of donation continues therefore to be presented as one that is altruistic, and one that the public are struggling to sustain – a topic that Emma King refers to in her article on cultured red blood cells using stem cell technology for this special issue. This dominating influence of the altruistic nature of donation is today reflected in the policy relating to gamete donation for example, in that ‘payment’ to egg and sperm donors should be classified as ‘reimbursement’ for the expenses incurred during the donation i.e. travel or childcare costs. Whilst the difference in language might be small, the implications for society can be deemed to be significant. Paying donors for their donation would not only put a price on human body parts, but also in the case of donating gametes, on the basis of ‘life’. Donors, in turn, would benefit from their donation, and therefore no longer be altruistic in their act of donation. Yet, the evolution of practices within clinics, such as egg-sharing between women with fertility problems in return for a reduction in the cost of fertility treatment, illustrates the need for a critical approach to re-imagining donation to generate alternative understandings of donation in the twenty first century.
Attention to some concepts, such as a right to donate, has been reignited as new uses for previously ‘wasted’ blood have been generated. Women who wish to store the cord blood as result of giving birth to their baby, but are unable to afford the cost of commercial cord blood banks, view the option to donate to the English public bank as an opportunity to also gain inexpensive storage. So, if their baby or a family member requires the cord blood due to a future illness, then the cord blood might be available for use, without incurring the cost of commercial bank storage. In essence, the women perceive gains resulting from their donation. However, donating to the public bank is restricted according to the location of the collection sites in England. Therefore, for some pregnant women who are unable to donate to the public bank due to not living near a maternity ward that acts as a collection site, a right to donate emerges in order to acquire the benefits they perceived arise from affordable storage.
Consent has been considered king when discussing the donation of body parts, tissue and fluids, with the intention that they are given freely and voluntarily – a topic Charlotte McLachlan and Gemma Potts apply to their paper on prisoners donating their kidneys for this special issue. But this perception of donation is challenged when we consider companion animals as blood or organ donors or the introduction of the opt-out policy for organ donation in Wales. No longer can the act of donation be simply considered as one that is active, physical, or conscious. In cord blood donation, where the blood is collected from the placenta that was attached to both the pregnant woman and the foetus, there has been much debate as to whether it is the mother or the baby that has donated. Similarly, in the case of deceased organ donation, healthcare professionals rarely go ahead with a retrieval if the next of kin have not consented to the donation, despite the deceased person being on the organ donation register. It is not always clear then who is ‘doing’ the donating – those consenting or those physically giving.
Policy and practices differ across the types of donation and the purposes of donation. For example, donors are identifiable in some practices, but not in others – a topic that Rebecca Dimond considers in her article on mitochondrial donation for this special issue. The removal of gamete donor anonymity in the UK means that donors are no longer in the shadows, but instead can be identified and acknowledged for their role in the process – a topic that Cathy Herbrand and Nicky Hudson discuss in their paper on information sharing in donor conception in the UK and Belgium for this special issue. However, the practice of identification of donors is not applied to the case for blood or cord blood donation. Through these differences in policy and practices, are we inadvertently privileging some body parts, fluids, tissue above others, constructing a hierarchy of donations and donors? Do body parts used in art exhibitions attach less meaning compared to those used in treatment, education, or research? Or do we give meaning to body parts, tissue and blood previously considered a ‘waste product’ or ‘replaceable’ through the act of donation, so that the body part, tissue or fluid is perceived as life saving or advancing scientific knowledge because of the purpose of donation. It is the same body part, tissue or fluid donated, but for different purposes, and therefore generates different meanings. Thereby prompting the questions what can we learn about the body parts, tissue and fluids donated, and the relationships we have towards these body parts, tissue, and fluid – a topic that Patricia Mahon-Daly explores in her article on blood donation for this special issue? All donors and their donations are therefore not equal.
The articles that follow in this special issue are the product of the first Deconstructing Donation Conference held at Lancaster University in December 2014. The conference included presentations from practitioner and academic researchers in the field of donation, as well as initiating a week-long writing competition for amateur authors, using a simple statement to create an associated with donation ‘organs of donation’ (https://hourofwrites.com/
search?t=organ+donation). The conference, funded by Lancaster University and the Institute of Medical Ethics, led to the British Sociological Association Deconstructing Donation Study Group being established. The Group aims to explore the understandings surrounding ‘donation’ today and ignite inter- and multi- disciplinary dialogue between researchers and practitioners in the field of donation. Since its inception, a range of activities have taken place, including a Pecha Kucha session at the BSA Medical Sociological Annual Conference (presentation recordings available on the BSA website), and the second Deconstructing Donation Conference is planned to take place on 2016 (http://www.britsoc.co.uk/groups/deconstructing-donation.aspx). The articles in this special issue are a part of this continuing discussion of deconstructing donation today.
Dr Laura Machin & Miss Lisa Cherkassky
December 2015