According to a paper published in Sociology of Health & Illness, a person’s unwillingness to become an organ donor may be explained by a significant information deficit, mistrust for the medical establishment, a moral opposition to killing, and views on bodily integrity. These positions of unwillingness have undoubtedly contributed to the shortage of organs available for donation.
Study researchers performed 12 qualitative social interviews and 9 focus groups, interviewed experts, and analyzed both documentation and presentations from organ donation critics and supporters. Interviews and focus groups included individuals who were undecided or skeptical of organ donation. Using these data, the investigators developed comprehensive insight into the public’s perception of organ donation in Germany. The study focused on the decisions of individuals regarding organ donation after death.
The primary position that tends to contribute to an individual’s reluctance to become an organ donor is an information deficit. Typically, this information deficit results in a person refusing to make a decision either for or against donation. Using this position, the consensus is that most individuals would rather have an extensive description of the information regarding organ donation rather than receive only communication that describes the positive aspects of donation. However, many people who believe there is an information deficit view organ donation materials as propaganda and would rather have neutral information to support saying “yes” to donation.
There is also a mistrust position that contributes to a person saying “no” to organ donation, represented by individuals’ perceptions of the medical establishment as devious or untrustworthy. Commonly, many individuals suspect that physicians might treat patients differently if they are registered organ donors, resulting in lower quality of care and physicians who allow their patients to die so that organs can be harvested more readily and quickly. Greed and corruption, which have been historically linked to the medical field on occasion, are the primary concerns involved in the mistrust position.
A no-killing position is described as an emphatic and explicit refusal to donate. Simply, this is a moral position that states that brain-dead patients are not actually dead, and that the removal of organs for donation is what contributes to death. In addition, the bodily integrity position is defined as an individual’s unease at the thought of their organs being transplanted to a foreign body. This position is not generally connected to mistrust or moral indignation; rather, bodily integrity is linked to an individual’s identification with the body in its entirety. If the organs are separated, the idea of the patient as a body shifts to the patient as mere matter.
The study was limited in its sample size as well as the ability to determine whether these 4 stances on organ donation generalize across sexes, social classes, or ethnic backgrounds.
The study investigators suggest addressing concerns regarding bodily integrity with sensitivity to develop discourse that’s inclusive, “rather than hegemonic and clearly driven by the interest in increasing the willingness to donate organs.”
Pfaller L, Hansen SL, Adloff F, Schicktanz S. ‘Saying no to organ donation’: an empirical typology of reluctance and rejection [published online June 28, 2018]. Sociol Health Illn. doi: 10.1111/1467-9566.12775