It’s often portrayed as a story of exploitation. In the early 1950s, Henrietta Lacks, a poor, young African-American woman, learned she had terminal cancer. Cells collected from a biopsy of her cancer were cultured without her knowledge or permission to develop a cell line, called HeLa. Over the ensuing decades, research using HeLa cells led to scores of medical advances, saving lives — and making a lot of money for a lot of people, though not for Ms. Lacks’s family.
All of this has gotten people talking about the previously obscure world of research with discarded biospecimens, the parts left over after we undergo surgeries, biopsies and blood tests. Some are calling to change the rules, to require consent from patients before biospecimens are studied or to pay patients if specimens lead to medical advancements down the line. The Obama administration rejected these arguments, and many people are surprised to learn that, so long as information identifying the source of the specimen is removed, what happened to Ms. Lacks can still happen today.
Many aspects of Ms. Lacks’s story reflect genuine injustice: the racism that characterized the health care system of her day; the suffering of her young family after her death; their own lack of access to health care. But should we be outraged by what happened to her cells, and could happen to our own?
First, no one is taking biospecimens from patients’ bodies without their permission. Patients have consented to the clinical procedure as important to their medical care. What harm could come from using leftover materials, which would otherwise be thrown away, for research?
Perhaps we should be concerned about risks to a patient’s privacy, but that is why we remove the identifying information. Although researchers have shown that it is possible to “de-anonymize” specimens — using clues to link them back to individuals — there have been no reports of anyone doing this for nefarious reasons. And even if there were, the answer would be to sanction the culprit through fines or criminal charges, not to make it harder for researchers to get these samples in the first place.
What is left, then, is our claim to autonomy: Many of us intuitively feel we should be able to control how biospecimens derived from our bodies are used. But leftover biospecimens are just medical waste to most of us, as we lack the expertise to imbue them with scientific value. Nor have we done anything to make them valuable, other than being born with a particular genetic variant or afflicted with a particular malignancy.
This is why calls to pay patients are misplaced. In addition, unlike HeLa, in which one patient’s…