However, Judge Limbaugh ruled that patients had no such rights. In his view, the right to withdraw merely meant the right not to contribute more tissues. The right to have the tissues destroyed meant only that the samples would be used anonymously. The guarantee that tissues would only be used for prostate research could be ignored, and WU was free use the tissues for any purpose whatever.
This contradicted prior tissue cases in which courts have ruled that written documents do indeed afford patients ongoing rights to tissues after they had left their bodies. The fact that Limbaugh’s decision also abrogated Federal guidelines left many observers uneasy. In addition there was the awkward legal matter that any donation with these restrictions could not be termed a gift. And the ethical issue was plain. Patients had donated their tissues with a written promise of control. Now that written promise was deemed worthless by a judge.
Research universities around the country greeted the ruling with unseemly enthusiasm, and hastily joined forces to prevent a successful legal appeal. Although the National Institutes of Health and other federal centers conduct research under the federal guidelines, universities now claim that these rules are impossibly onerous and impede research. Unless researchers are allowed to do whatever they want, they warn patients the flow of live-saving miracles will dry up. This kind of high-handed attitude toward patients went out of style in the 1970s, after the first waves of malpractice litigation brought a bruising new reality to medicine.
Similarly harsh legal actions are likely to follow in the aftermath of Catalona. Patients have serious and legitimate interests-practical, legal, and religious- in their tissues and how they are used in research. If the documents signed for Wash U are not sufficient to stand up in court, universities will soon face more restrictive language, this time drawn up by patients’ rights groups. Major donors may be pressured to bypass universities that refuse to follow federal guidelines; alumni groups may be mobilized to protest university policies. Such tactics are known to be waiting in the wings, pending the Catalona appeal.
For universities, perhaps the most damaging outcome may be the loss of confidence that patients feel in major centers of research and healing. There was a time when physicians were ranked just below supreme court justices. Those days are long gone. Our university hospitals and major medical centers still command respect. But the perception that they are businesses like any other is growing stronger every day. Except they’re not—they’re non-profits, exempt from most of the rules and disclosures that are required of American businesses. In short, caveat patients, keep copies of everything you sign, bring a lawyer to every medical appointment, and always, always watch your back.