Public Health and Law Experts Consider Alternative Organ Donation Policies

A panel of public health and law experts discussed how policymakers can encourage organ donations in a Friday webinar sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School.

The speakers tackled an array of institutional responses to what the center’s executive director, Carmel Shachar, opened the event by calling a “woeful” gap between the demand for organs and the number of individuals willing to supply them. Harvard Business School Advanced Leadership Initiative fellow James W. Lytle moderated the subsequent discussion between Law School professor Cass R. Sunstein ’75, New England Donor Services CEO Alexandra K. Glazier, and the British National Health Service’s Blood and Transplant Division Project Lead Phil Walton.

Sunstein said that out of five alternatives to structuring the organ donation process, prompted choice — in which the government nudges citizens to make a choice on organ donation — is his preferred policy because it maximizes autonomy and saves lives.

“Prompted choice is best because it’s fully respectful of chooser autonomy,” Sunstein said, adding that it also contributes to a “massive increase” in the percentage of people who enroll in the organ donation registry.

Sunstein said a less preferable alternative is a “routine removal” policy, in which anyone with “no use” for their organs would be compelled to make them available to someone in need. While this policy would be the “gold star” standard for maximizing organ donations and thus saving lives, he said that it is a “violation of chooser autonomy” and would face a “public wall of disapproval.”

Sunstein laid out three other alternatives: an opt-in program in which individuals volunteer to donate organs, an opt-out program in which individuals must actively disenroll if they do not want to donate, and a “mandatory choice” program which forces individuals to choose whether or not to donate. All three policies, however, do not fully satisfy chooser autonomy nor maximize the number of organ donations, he said.

For prompted choice to be successful, it “ought to be supplemented by an assortment of nudges, such as media campaigns,” he added. Public health officials in Brazil and Belgium, for example, made a “coordinated effort” to publicize organ donation, which Sunstein said has made their prompted choice programs successful.

Walton said Britain is still in the “early phases” of understanding the success of the opt-out regime in England and Wales, which the NHS implemented in 2015. He said the country has seen an increase in consent rate for donors after brain death, but consent rates for donors after circulatory death did not experience the same increase.

Walton said the Welsh government faced difficulties implementing the novel opt-out legislation.

“We were the first country in the United Kingdom to go live with the legislation and so everyone was taking a really full eye over what it was going to do,” Walton said. “But that paved the way from an England point of view so that we didn’t have that hostile spotlight.”

Glazier said the opt-in system in the United States is rooted in gift law, rather than informed consent principles, and is built around simple prompts for donor registration during driver’s license renewals or through health apps on mobile devices.

This helps normalize organ donations and cater to the American values of individual autonomy, she said.

Glazier also highlighted the importance of cultural awareness in discussing organ donation, which Shachar also emphasized in an interview following the event.

“Culture shapes a lot of our outlook,” Shachar said. “When you approach medical decision-making, the U.S. is a very individualistic culture, but other cultures really place the individual within the context of a social network or a family.”

While the panel depicted various architectures that have been implemented to encourage organ donation, all speakers agreed that the existing policies must be reevaluated to address the growing number of patients in dire need of donations.

“It’s really worth saying out loud and remembering that, uniquely, donation is a community activity,” Glazier said. “And a successful engagement of the community is how donation happens.”