Two University of Toronto students surveyed almost 500 members of the Taiwanese public about organ donation. Many had no idea how to do it.

By Jonathan Wang and Derrick Lin

Is it sacrilege to donate one’s organs? Or is it a sign of altruism? It’s a question many Taiwanese struggle with.

Donating a healthy organ, such as a heart, kidney or liver, can be a lifesaving measure for a patient experiencing organ failure. But for some Taiwanese, removing one’s organs after death desecrates the body and may affect a person’s quality of living in the afterlife.

Starting in 1987, the government attempted to boost the organ donation rate and introduced the Human Organ Transplantation Act. But the country’s deceased donor rate is still comparatively low – less than half that of best performing countries like Spain, Croatia and Belgium.

In 2013, Taiwan pushed through major structural changes that reorganized the country’s organ procurement organizations. The following year, a new bill gave waitlist priority to individuals whose family members donated organs in the past. In 2015, anot her bill was introduced to prohibit transplant tourism.

Along with these changes comes new opportunities to develop strategies to increase Taiwan’s organ donation rates. With funding from the Asian Institute’s “Big Ideas Taiwan Competition”, we set out to investigate Taiwanese attitudes and knowledge about organ donation.

Hitting the Pavement to Talk about Organ Donation

We decided to base our work in Taipei and Taichung, two of Taiwan’s largest cities.

Over a one-month period, we collaborated with the Taiwan Organ Registry and Sharing Center (TORSC) and Taiwan’s Organ Donation Association (ODA) to develop a survey tool that assesses personal involvement, knowledge, and attitudes regarding organ donation.

The ODA is a non-profit organization that supports families who choose to donate the organs of their deceased. Every month, members of organ donor families volunteer for ODA to hand out pamphlets to raise awareness about organ donation. We were invited to join the ODA while they carried out their work.

Jonathan Wang (left) and Derrick Lin (right) head to the streets to ask the public about organ donation. Photo courtesy of Jonathan Wang.

Through our conversations with donor families, we learned that some family members were conflicted over their decision to donate the organs of loved ones. Although they believe they made the right decision and recognize that they are renewing the lives of others, the stigma still remains. Many Taiwanese disapprove of organ donation because of religious beliefs; they think that the body should not be altered or disfigured after death.

Willing to Donate, But Don’t Know How

Later, we struck out on our own to learn more about the general public’s attitude towards organ donation. We approached adults randomly at public universities, shopping malls, public parks, and MRT stations to complete a short survey about organ donation. We also surveyed the public through a chain-referral sampling process via an agri-business company.

From our survey of 459 respondents, we learned that 82 percent were willing to consider donation if a family member was in need of an organ, and 45 percent were willing to donate if a friend was in need of an organ.

This, however, did not equate to having registered for organ donation as only 13 percent of respondents had registered. These results suggest that an opportunity exists in translating the willingness to donate into actual registered organ donors.

We also found that there was a tremendous lack of knowledge about organ donation and transplantation. About half of respondents did not know how to register for organ donation. This finding, in part, helps to explain why such a small proportion of registered respondents was observed in this study.

Opting into Taiwan’s donor program is not a straightforward process. To indicate willingness to donate, a physical form must be completed, and then mailed to TORSC, where it is manually inputted into a database. Living donation is also limited to family members in Taiwan.

Shining a Light on Organ Donation

The most common source of information cited by the public about organ donation was television, followed by health agencies and the internet. That’s consistent with previous studies that describe the impact of mainstream media on public awareness of organ donation in Taiwan.

Since mass media is the primary source, it’s important to examine whether the media is providing accurate information on organ donation, transplantation science, and surrounding policies. For education interventions to be effective, further investigation of these media outlets is necessary.

Perhaps more worrisome, a large percentage of respondents indicated they received information about organ donation from “no specific source” and did not elaborate further. Reliable information may not be readily available, or the public is not concerned enough to actively seek out information on the issue.

Our study also had several limitations. The chain-referral sampling method we used is susceptible to community bias and anchoring effects. Due to the short time period we were in Taiwan, achieving an appropriate sample size using random sampling became unfeasible. Further study of the Taiwanese general public — such as a survey using simple random sampling with variables identified as significant in this study — is warranted.

We would like to thank our mentors at Toronto General Hospital: Dr. Joseph Kim and Mr. Segun Famure. We also would like to thank Ms. Vicky Chang of the Organ Donation Association (ODA) and Ms. Chia-Chi Liu of the Taiwan Organ Registry and Sharing Center (TORSC).