Organ Donation Ethics and Culture
Dr. Laura Machin and Britzer Paul Vincent Paul Raj
Ethical uncertainties in the face of deemed consent for organ donation in the UK
Dr. Laura Machin
Dr. Laura Machin is a senior lecturer in Medical Ethics at Lancaster University. Laura’s research interests rest within the social and ethical aspects of health and medicine. Previously, she has focused upon the social and ethical aspects surrounding reproductive medicine, in particular sex selection technology, and gamete and embryo donation. Laura has also explored the moral and political aspects of umbilical cord blood donation, banking, and transplantation, as well as considered the use of donated deceased bodies to teach anatomy to medical students.
In her recent DoRN Week of Talks presentation, Laura discusses research that she is currently working on which explores the introduction of the deemed consent policy in the UK, and looks at the perceived ethical uncertainties for doctors and nurses working on the front line.
To view Laura’s free talk, please click on the video below.
Organ donation behaviour from the context of Indian culture
Britzer Paul Vincent Paul Raj
Britzer Paul V’s research areas of interest include organ donation, health promotion, qualitative research, strengthening health systems, health behaviour, communication and education.
In his recent DoRN Week of Talks presentation, Britzer Paul V discusses his PhD research which is conducted with the aim of better understanding organ donation among the Indian population.
To view Britzer Paul V’s free talk, please click on the video below.
Q & As
The DoRN Week of Talks provided a unique opportunity to engage in an easy and convenient Q & A with presenters. Below we have listed the questions that we received for Laura and Britzer Paul V, along with their answers.
Q&A- Dr. Laura Machin
Could you please expand on what you meant by 'voluntary ownership' on the concluding thoughts slide of your presentation?
I think the point you’ve made has highlighted to me a very practical, formatting issue relating to how I present the potential donation ethical principles. So, ‘voluntary’ and ‘ownership’ are two separate principles and values in my mind, rather than reading as one principle. I’ll be sure to make this clearer when writing up my ideas and sharing my thoughts on the topic.
Secondly, and to engage with your point more substantially, the donation ethical principle ‘voluntary’ emerged in the data set when participants discussed how genuine the consent was from donors under a deemed consent system. There was concern that a deemed consent policy laid open the possibility for organs to be retrieved from people who may not wish to donate but had not opted out of the system. At times, the opt out function was presented as attempting to avoid this from happening and yet, doubt was created when participants referred to the process of opting out and/or someone’s ability to opt out. The opt out process was described by participants as needing to be transparent and accessible to all. Such standards were implied to ensure that donation was voluntary despite the deemed consent policy, and people were not coerced into donating.
In terms of ‘ownership’ as another donation ethical principle, this arose when participants created uncertainty around how successful the deemed consent policy would be in practice. The family veto, societal culture surrounding death and body ownership, and the culture surrounding the act of donation were all depicted as hindering the potential success of the deemed consent policy. These perceived restrictions were implied to be rigid and immoveable. Alternatively, participants accepted that the deemed consent policy may lead to an increase in the number of donations, but its possible success was undermined and lacking justification by references to the intangible ‘costs’ to the culture of donation. The participants portrayed themselves as frustrated, and therefore implied they were supportive of organ donation, and increasing the number of donors, whilst also demonstrating insight into the family perspective and their involvement in organ donation decision making. The family were presented as powerful and incredibly influential in organ donation decision making. In one way this power was justified by references to societal perceptions of body ownership resting with relatives of the deceased. Yet, the power was also presented negatively as a possible cause for conflict between participants and family. In both instances, the deemed consent policy was implied as having either negative consequences ie “battles” with family, or “state ownership”. Alternatively, it would be simply ineffective, and unwarranted in the face of the family veto. For these participants, they were able to portray themselves as concerned about body ownership and valuing the voluntary nature of organ donation, which they presented as lost in the face of deemed consent and family veto.
Q&A- Britzer Paul Vincent Paul Raj
I find it surprising that the relationships with one's family have been found to have the most influence on organ donation in India. This seems like a hard issue to address. How do you expect your research will inform campaigns that address this issue?
This systematic review is a part of my Ph.D. research work. It showed that individuals from India opted family as the greatest barrier toward deceased organ donation. Informing one’s own willingness to be a deceased organ donation is a vital role player for their families to give consent or make a decision in their absence. However, while further looking at research in my review, majority of the individuals have not initiated any conversation or discussed their willingness with their family members. Therefore, making family to be a perceived barrier in informing their willingness, rather than family being a barrier by not approving their willingness to pledge or register. Based on these findings, a part of my Ph.D. research looks from a subjectivist point of view on why individuals from India perceive family to be a barrier and how they think family influences them in such matters. I am also looking at what the individuals need to address such barriers in informing their willingness to register or pledge for deceased organ donation.
Understanding the deeper reasons for how and why family being a hurdle and barrier toward deceased organ donation in India will help to improve strategies that enable the involvement of family in discussion, to break the barrier of silence on this topic, to enable the environment to look at this as an essential conversation, addressing the generation gap among family members, and what has to be addressed appropriately according to the need of the community to address this issue.
Having a conversation on one’s own willingness to donate with their loved ones is important as per the organ donation law in India. This is mainly because the ultimate decision is based on surrogacy decision-making after the death of the individual in India. Therefore, the findings of my further research will inform the stakeholders involved in organ donation campaigns in India on the appropriate strategies need to address the barriers pertaining to family involvement in such decision-making processes.