“Why Didn’t We Do It”? Early-Life Loss And The Problem Of Post-Mortem Consent
University of Sheffield, United Kingdom
The National Health Service (NHS) estimates that one in six UK pregnancies will end in miscarriage. Furthermore, approximately 5,544 babies were recorded as stillborn or died within the neonatal period in the UK in 2016 (ONS 2018). Post-mortem can play a critical role in establishing why some pregnancies end prematurely and why babies might die during or after birth. But, research continues to highlight low consent rates as a cause for concern, an obstacle to the advancement of scientific knowledge, clinical governance and medical education. Questions surrounding the nature and meaning of informed consent have often been at the centre of sociological debates on research ethics. In the sensitive clinical arena of paediatric pathology, consent remains an extremely highly charged emotive issue. This paper seeks to explore some of the problems associated with both taking and giving informed consent, drawing on data from a qualitative study on fetal and neonatal post-mortem. Although parents in our study found it difficult to consent to post-mortem, it was also not uncommon for them to experience feelings of regret later. While health professionals emphasised the significant value of post-mortem - particularly for bereaved families- they often found it too difficult to ask parents for consent at this traumatic time, often feeling inadequately trained. By exploring professional and parent experiences of the consent process this paper seeks to shed light on post-mortem decision-making, and also feeds into wider conceptual and ethical debates in sociology on the nature and use of ‘informed’ consent.
Can a Case Be Made for Expanding Medical Aid in Dying in the United States
Boston College, United States of America
As a number of U.S. states are actively campaigning for the legalization of medical aid in dying (MAiD), questions regarding how to improve the existing legislation and develop improved legislative models have become of central concern. Discussions of whether and how to expand access to MAiD often ignore a number of important, but contentious issues. Our study examines evidence from a variety of jurisdictions where MAiD is legal to better inform debates and to foster the development of new, more efficacious legislation that could be replicated, with minor modifications, across the United States and European countries. We draw upon the legislation in relevant jurisdictions, quantitative empirical medical studies, and qualitative sociological studies in addition to 25 semi-structured interviews conducted with 11 healthcare professionals with experience providing MAiD, 10 representatives of organizations in support or opposition to MAiD, 3 bio-ethicists, and 1 end-of-life lawyer. Participants were located in the U.S. (Oregon, California, Vermont, Colorado), the Netherlands, Belgium, Switzerland, Colombia, Canada, Quebec, and Victoria, Australia. We find evidence suggesting that expanding legislation in the U.S. to include persons with some degenerative diseases or mental illnesses, and potentially mature minors, would be of benefit to many individuals seeking MAiD. Legalization of advance requests would expand access to individuals with dementia, while legalization of physician-administered MAiD would improve access for those who are unable to orally self-administer medication. The evidence suggests that for the foreseeable future the expansion of MAiD programs in the United States is most likely to proceed on a state-by-state basis.
Mix & Match: Constituting Racialised Communities in UK Stem Cell Donor Recruitment
University of Sheffield, United Kingdom
This paper presents a new Wellcome Trust-funded project starting in 2019 exploring minority ethnicity stem cell donor recruitment in the UK. Using ethnographic and digital methods to explore online and offline efforts by charities and individuals, the project investigates the role of race and notions of “mixed-race” in contemporary biomedicine.
Stem cell transplants are an increasingly common cancer treatment option, but minority ethnicity and mixed-raced people in the UK–as in most of the global north–are far less likely to find matching stem cell donors than their white counterparts. A number of small charities and campaigns (generally led by people themselves racialized as minority ethnicity) seek to address this inequality by organising donor drives and using social media to encourage minority and mixed-raced people to register as stem cell donors.
This paper presents pilot data, and foregrounds the theoretical notions of biosociality and biosocial communities as useful conceptual tools for critically unpicking the collectivising consequences of genetic technologies like those used to finding matches between patients/donors. It also presents the project’s innovative mixed-method approach, including charity ethnography, and multi-platform social media analysis of minority ethnicity stem cell donation campaigns.
The paper describes the project’s aims to (i) explore how racial difference is mobilised to encourage potentially life-saving acts of donation within minority ethnicity communities, (ii) contribute to understanding how significant ethnic health inequalities are being addressed by small charities and individuals, and (iii) understand how race and notions of heredity are being enacted in a contemporary biomedical context.
Mapping The Attitudinal Repertoires On Health-related Donation In Europe: A Multiple Correspondence Analysis
Ghent University, Belgium
The debate on prohibiting compensation and payment of donors of bodily substances for security reasons has been raging for several decades. Due to limited research on public attitudes regarding the relation between donor safety and donor compensation/remuneration we shift focus towards the attitudes of both donors and potential donors themselves. More so, we consider whether these attitudes are related to other concerns such as the perceived risk of contracting diseases or fear for complications resulting from the medical procedure, and EU legislative support on donation (safety) policies. First, using Eurobarometer data of 2014, we map the attitudinal repertoires of European citizens on these issues using Multiple Correspondence Analysis (MCA). Second, we aim to explore how these repertoires are related to individual-level characteristics (socio-demographic information, donor status,…) and the national context. Our results indicate that the existing attitudes can be summarized by two unique repertoires. The first repertoire uncovers an attitudinal opposition between the (dis)approval of symbolic gifting (e.g. non-cash item rewards, refreshments,…) and compensation (e.g. compensation of transportation costs, receiving time off work,…). While the acceptance of cash payment for donors contributes substantially less to the formation of this first repertoire, it did, however, contribute strongly to the second attitudinal dimension. This second repertoire is mainly characterized by opposition between trust in the safety of transfusion, support for EU legislation and the (dis)approval of cash payment for donation. Both the individual-level characteristics and the national context appear to be highly relevant in explaining the variance in attitudes.