EXECUTIVE SUMMARY
The most common goal of bone marrow donation is to harvest hematopoietic (blood-forming) stem cells (HSC) for transplant in patients with life threatening diseases like leukemia and anemia. For decades, the main method of HSC extraction was aspiration: a painful procedure wherein a needle is inserted directly into the donor’s bone, extracting the soft, spongy tissue from its source. Today, over 70% of HSC donations are instead extracted indirectly from the bloodstream through a safe, non-invasive technique known as apheresis, after which the cells quickly regenerate.
Nearly 2% of the U.S. population is a registered bone marrow donor. However, research has found a 65% gap in the demand and supply of HSC transplants despite donation becoming medically easier. And while the volunteer donor registry has grown in recent years, it remains beset by low follow-through rates. Using the best available data, this paper estimates that the gap between the actual and optimal size of the bone marrow registry leads to 1318 fewer transplants and 275 deaths per year. This impact is felt disproportionately by racial minorities, for whom finding a close genetic match is most difficult. This report argues that legalizing compensation for HSC donors would help to close that gap by increasing registry size among target populations while improving follow-through rates of those who are called upon to donate.
In 2011, a federal court ruled compensating donors of HSC by apheresis to be legal due to the procedure’s comparability to plasma and whole blood donation. Nonetheless, the Health Resources and Services Administration (HRSA) has proposed a rule change to redefine HSCs as an organ regardless of the source of extraction, making compensation to all HSC donors illegal under the National Organ Transplant Act. HRSA has until December 18th to move forward on its rule.
HRSA is concerned that legal compensation could cause exploitation, devalue the human body, and/or reduce the altruistic motivation of donors. In a September 7, 2016, open letter to HRSA, twenty-two of the country’s most prominent ethicists argued that each of these objections are fundamentally flawed. In that time the list of signatories has grown to thirty-seven.
This report goes deeper into disputing HRSA’s weak ethical objections, and outlines the strong positive case for compensation. The Niskanen Center thus joins the signatories of the letter found at DonationEthics.com in demanding that this rule not be enacted. At stake are thousands of leukemia and anemia patients that face preventable death due to a self-inflicted shortage of bone marrow donor matches.
Read the report in its entirety here.