An excerpt from Pluck: Lessons We Learned for Improving Healthcare and the World, published by Silicon Valley Press.
We met Joseph S. Murtaugh, our new chief at the National Institutes of Health, for the first time on July 3, 1967. He sat behind his desk, looking every bit like Hollywood’s image of a 1960’s civil servant: white button-down shirt, narrow tie, black-rimmed glasses, and short-cropped hair accented with silver at the temples.
We came to know Murtaugh’s brilliance, humility, and unwavering dedication to the American health care enterprise. He jokingly called himself one of “the great unwashed” because, unlike his colleagues with an MD or PhD after their names, he did not hold an advanced degree. Still, his genius was no secret. Murtaugh was easily one of the NIH’s best writers, and he drafted NIH director James Shannon’s annual presentation to Congress, which regularly awarded the NIH more funding than it requested. Whenever the NIH had a public policy or strategic program issue, it usually fell on Murtaugh’s desk, as director of the Office of Program Planning.
On day one, we arrived in his office as he was grappling with such an issue, and he wanted to talk to us about it. Stacks of papers were piled everywhere. The phones rang constantly. Murtaugh pushed two newspaper clippings toward us. The headlines were “Bare Human Gland Sale” and “Coroner’s Aide Robs Corpses.”
“Gentlemen,” he said, “we have a problem.”
Medical advances can often stir up ethical issues, which ripple into two courts: the court of law and the court of public opinion. These news articles described a public relations nightmare brewing at the National Pituitary Agency (NPA), which operated with NIH funding. Founded in 1963, the NPA had been collecting 72,000 cadaver pituitary glands annually for research purposes. The intent was noble.
Scientists at Johns Hopkins University and other academic institutions extracted human growth hormone (HGH) from the pituitary glands, which were used for NIH-funded clinical trials at various centers around the country. Pediatricians and endocrinologists were studying HGH deficiency in children, which affects one out of every 3,800 newborns and causes hypopituitary dwarfism.
Problems arose in Los Angeles and Minneapolis when some of those glands were taken without consent. When pathology assistants in the local coroners’ offices learned that the NPA would pay two dollars (the equivalent of fifteen dollars in 2022) for pituitary glands, they saw an opportunity to make some extra cash. They started taking cadaver glands without obtaining permission from the next of kin and shipping them to the NPA at Johns Hopkins University. Imagine the public outcry we would hear if people learned that their tax dollars were being used by state medical examiners’ offices to fund research on body parts taken and sold without consent. When this story was exposed in the press in the 1960s, the NPA, along with its funder, the NIH, had to deal with the fallout. Joe Murtaugh told us, “I want you to find out everything you can about the law regarding the use of cadaver material for medical purposes and figure out what we need to do to assure our grantees comply.”
This was our first assignment as officers in the USPHS. What began as “solving the pituitary problem” led us from the Georgetown Law Library to the Uniform Law Commission, the American Bar Association, Congress, and eventually on a worldwide exploration.
The state laws regulating the treatment of someone’s body after death fell into four categories: autopsy statutes, unclaimed body statutes, medical examiner (or coroner) statutes, and, in some states, organ donation laws. If a death occurred due to homicide or suicide, in an accident, or in a case involving a potential threat to public health, such as an infectious disease or viral pandemic, state laws authorized medical examiners to perform an autopsy to investigate the cause, regardless of the next of kin’s wishes. These laws, however, did not provide examiners with the legal authority to take cadaver organs or tissues for any other purpose, not even altruistic ones, without consent.
Many states permitted the next of kin to authorize an autopsy on the deceased, but autopsy statutes were not so broad that they authorized the procurement of organs and tissue for donation, education, or research. Several states had laws regarding unclaimed bodies, providing that they could be delivered to medical schools and hospitals for educational purposes, but only after a twenty-four-hour waiting period, during which time the hospital was obliged to seek the next of kin.
Many states had recently adopted organ donation laws, but the statutes varied wildly. Forty-one states had statutes that specifically provided authority to individuals to donate all or parts of their body after their death for medical, scientific, or therapeutic purposes. But these statutes ignored the importance of many medical issues, such as the time-sensitivity of organ donation for transplants. Too often, the act of donating was treated as an extension of the distribution of property after death, a process that often took days or weeks, by which time organs were no longer useful for transplantation purposes.
We developed a broader understanding of the laws governing the treatment of dead bodies. Our research helped us discover the nation’s leading health law scholars, and we began making calls. We visited health law leaders around the country. In Pennsylvania, we saw Cyril Wecht, who was an MD, JD, pathologist, and the medical examiner for the city of Pittsburgh. We had found his 1966 publication, “The Medico-Legal Autopsy Laws of the Fifty States and the District of Columbia” to be invaluable.
The scope of our research grew beyond the questions, “What are the current laws regarding dead bodies?” and “How do we assure that NIH grantees abide by them?” to “What should organ donation laws be?”
Alfred Sadler is a physician. Blair Sadler is an attorney. They are the authors of Pluck: Lessons We Learned for Improving Healthcare and the World.
Image credit: Shutterstock.com
