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How to Construct Better Organ Donation Policy and Achieve Health Equity

By James R. Jolin

The United States is facing an organ donation crisis, with massive gaps between supply and demand.

Per estimates from the Department of Health and Human Services (HHS), over 106,000 Americans are currently awaiting this life-saving medical treatment. Further, the burden of this shortage falls unequally:  in 2020, while approximately 48% of white patients in need of transplants received an organ, only 27% of Black patients secured one.

The stakes are too high to allow the organ donation crisis to proceed in the U.S. without bold intervention. But with many policy options on the table, unresolved ethical concerns, and a patchwork of organ donation laws across the country, the proper path forward is not immediately clear.

Organ donation is a uniquely challenging policy issue. Relative to other forms of health care, effective care in the realm of organ transplants represents a collective responsibility: in the case of organ donation in the U.S., treatment is contingent upon the actions of millions of everyday individuals, often unaware of how many desperately need transplants and the potentially enormous benefit of their contributions.

In a perfect world, everyone would voluntarily sign up to donate their organs. Many nations’ opt-out organ donation policies reflect this kind of rosy optimism about their citizens: in its most basic form, these opt-out frameworks implicitly assume everyone intends to donate their organs, setting donation as the default from which individuals must opt out — if they are willing to incur the costs associated with the opt-out process.

At least anecdotally, quasi-naturalistic experimental results from Europe demonstrate the merits of properly implemented opt-out frameworks. Per results from a 2003 study, in Germany — a country with an opt-in system requiring individuals to sign up for the organ donation registry — donation rates were estimated to be around 12%. But Austria — a culturally comparable peer country — saw donation rates in excess of 99% under an opt-out framework.

While, theoretically, an opt-out model may do wonders for organ donation rates in the United States, it is not without its challenges. For one, opt-out represents a more paternalistic choice architecture than opt-in frameworks: it wrests the ultimate decision to join the organ donation registry from the individual, boldly assuming that they want to donate after death and often relying on inattention to keep donation rates high. And as health insurance policy debates evince, many Americans favor at least the perception of choice in policy relating to health care.

This tension between keeping donation rates high while still preserving some semblance of choice presents a formidable hurdle for U.S. policymakers considering opt-out frameworks in their organ donation policies — but one, in my view, they should face head-on. To ensure such an opt-out policy remains palatable to the American public, it must be supplemented with “nudges” that, at least facially, preserve the perception of choice, without decimating the donor pool. Such nudges can come in many forms, but one simple and cost-effective path forward may be mere advertising and government messaging changes.

Put concretely, a transition in U.S. states to an opt-out system could be accompanied by an advertisement campaign notifying the public of the change to organ donation law, and crucially, that anyone may opt out, if they so choose. But, given the nature of the U.S.’s organ donation crisis, opting out should not be made too easy. In conjunction with such a gesture intended to respect individual choice, policymakers could raise barriers by including tactful nudges on opt-out forms. Research from the United Kingdom has shown, for instance, that framing organ donation as an act of reciprocity and highlighting the number of deaths associated with low donation rates helps to boost organ donation rates. The U.S. could deploy similar messaging when establishing opt-out systems. Combining an advertisement campaign with nudges to dissuade opting out, policymakers may be able to balance individual agency with our desperate need for more organ donors.

Further research will be necessary to quantify the strength of this complex government messaging initiative and compare it against other proposals, but this example makes one thing clear: organ donation policy need not be a stark choice between a wholly paternalistic opt-out or wholly laissez-faire opt-in approach. Indeed, relying on the kind of behavioral nudges and framing effects that have proven effective time and again can allow policymakers to harness the best of both strategies to spur meaningful increases in organ donation.

James Jolin

James R. Jolin is an A.B. Degree Candidate in Government and Global Health and Health Policy at Harvard College and a student intern at the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. His academic interests lie at the intersection of criminal justice and public health.

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