Gendering organ donation: experiences of living women organ donors in India
1School of Social Work, Tata Institute of Social Sciences, Mumbai, India
Introduction: Living organ donation is the predominant method to obtain organs for transplant in India due to increasing cases of organ failure and limited cadaver organ donations. The data from National Organ and Tissue Transplant Organisation (NOTTO) for 2019 revealed that 78% of living organ donors are women. The proportion between receiving and donating organs reflects the existing gender and sex-based disparity. This inequality proves unfavorable towards women, and women constitute most of the living organ donors in India. The lack of research on living organ donors in the Indian context undermines the evidence on prevalent gender disparity in organ donation. Thus, this study aims to explore the experiences of women living organ donors to understand the reasons, decision-making process, and their experiences with the health care system during the donation process.
Methods: A qualitative exploratory design was employed to understand the experiences of living women organ donors. Fifteen in-depth interviews were conducted between May to July 2017 with women in Rajasthan (India), using Snowball sampling. The interviews were transcribed, translated, and analyzed using thematic analysis. A critical gender perspective was applied to elicit the role of patriarchy and gender roles during the data collection and analysis stage.
Results: Of the women interviewed, ten women had donated an organ to their spouse, and five had donated to their children. Women donors expressed a sense of self-sacrifice and a greater responsibility towards the health and wellbeing of the children and spouse. They perceived organ donation as their maternal or spousal duty to reduce the suffering of their husband/child and save their life. When encouraged or urged to donate their organs, women did not resist because they considered it their responsibility. During the organ donation process, male family members took charge of all documentation, whereas women only signed the documents. Women donors have not explained the organ donation process or the future health risks associated with the procedure. In most cases, doctors assured them that they would have a healthy life after donation; however, they experienced discrimination and neglect towards their health after the procedure from family and the health staff.
Conclusion: The study provides the empirical ground of women’s over-involvement as a donor which unveils the existing gender disparity and an unseen pressure on them being a wife or a mother to the recipient. In patriarchal societies like India, gender roles and existing power dynamics force women to become organ donors. Further, women's right to health and autonomy over their bodies is compromised during organ donation.
right-click to download