Academic journal article Health Sociology Review

Rethinking Elements of Informed Consent for Living Kidney Donation: Findings from a New Zealand Study

Academic journal article Health Sociology Review

Rethinking Elements of Informed Consent for Living Kidney Donation: Findings from a New Zealand Study

Article excerpt

This article links two related subareas of sociological inquiry. The first is located in the study of altruism and the donation of body tissue and organs, and the second pertains to the place of ethics in sociology, specifically in relation to critique of the role of informed consent within biomedical practice. In the following discussion, I bring these two subareas together by drawing on qualitative research examining the experience of living kidney donors in New Zealand from their perspective. Although bioethicists may appear to dominate discussion around organ donation and transplantation, sociologists began researching this field over four decades ago (Fellner, 1971; Fellner & Marshall, 1968, 1970; Fox & Swazey, [1974] 2009; Simmons, Klein, & Simmons, 1977). These scholars raised ethical issues - still salient today - about how to assure living kidney donors' informed consent in light of empirical evidence demonstrating non-deliberative decision-making, and the acceptable threshold of risk donors should be permitted to undertake. New to today's debate is the dominant institutional presence of bioethics and the language of principlism, the introduction of formal living organ donor guidelines and protocols (Dew et al., 2007; Fisher, 2003; The Authors for the Live Organ Donor Consensus Group, 2000), and a more recent emphasis on a doctor-patient partnership model of decision-making that actively encourages patient involvement in care management (Gillett, 2014; Manning & Paterson, 2009, Paterson, 2012).

This articles draws on in-depth interviews with 25 living kidney donors from across New Zealand, to discuss their experience of support from healthcare professionals (HCPs) throughout the donation process. This includes documenting donors' perceptions of the pre-donation evaluation and screening process, the receipt of information relating to the donation process, the coordination of appointments and workup for donation, psychological preparation, and post-operative follow-up care. Particular focus is placed on donor perceptions of the informed consent process, as study findings indicate that donors' experience of the consent process may be at odds with the Code of Health and Disability Services Consumers' Rights 1996. Instead of a primary healthcare focus on the threshold elements of informed consent, as defined below, study results indicate that more effort should be made to ensure donors are adequately informed about the donation process, and that each stage of the process is clearly articulated to better meet donors' needs. The aim of the article is to identify gaps in the informed consent process with respect to information disclosure, and to offer recommendations for changes to practice in light of participants' accounts.

Donor assessment and the ethics of informed consent

Live kidney transplantation is increasingly offered as an alternative treatment modality for end-stage renal failure, due to its benefits for extending and improving recipients' quality of life, and its cost-effectiveness compared to long-term dialysis therapy. Consequently, the number of the number of living kidney donations has expanded in many jurisdictions. For example, in New Zealand in 2012, approximately 50% of all kidney transplantation was from live donors (Organ Donation New Zealand, 2103). Although live kidney donation is considered to be relatively safe, with a mortality rate estimated at 0.03% and a morbidity rate below 10% (Matas, Garvey, Jacobs, & Kahn, 2000, p. 435), donors still face medical risks (Segev et al., 2010), as well as risk to their psychosocial wellbeing. This raises ethical concerns within the medical community, about violation of the principle of non-maleficence and the moral injunction to 'do no harm'. Medical professionals must weigh up the risks to the donor, a healthy individual, who is consenting to self-harm by undergoing surgery she does not need, alongside the benefits to the transplant recipient, who receives life-saving therapy or vastly improved quality of life. …

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