Blog | Friday, April 5, 2013

HeLa again at the frontier of medical privacy

On Twitter I was discussing the latest insult to the family of Henrietta Lacks, the woman whose cancer cells are still an important laboratory tool long after her death. The ethics here are fuzzy to some, so we'll break it down.

Several decades ago, an African American woman in Baltimore (the South, recall) was being treated for cervical cancer. I have little doubt that the doctors who cared for her were trying to do good. At the time, medicine was very paternalistic; there was no need to explain much to a patient. If they came for help, you as the doctor did what you thought best. There was little need for further input from the patient.

Her treatment was painful and ultimately unsuccessful, but the cells the doctors kept from her cancer became the nidus for a revolution in cell biology and research. Mrs. Lacks and her family were told nothing about this; she hastily signed a general consent, which was consistent with the ethics of the time. The decision to harvest her cells without her consent sent a wave of grief and mistrust through her family that has crossed decades.

In addition to the paternalism of the time, African Americans faced a medical system deeply imbued with the racism of the times. Southern hospitals were often segregated, and blacks were infamously used as research subjects without their consent and certainly without regard to their safety and well-being. African Americans and some poor and vulnerable whites were often subjected to involuntary sterilization.

In this milieu of distrust and maltreatment, the taking of a few cells takes on new meaning. Medical ethics have shifted away from paternalism in favor of patient autonomy, the core of which is informed consent. One might argue that consent loses meaning after death, but with advances in genomics, this boundary is becoming fuzzy.

First, let's dispense with the idea that your body becomes community property after death: it does not. Taking bits of someone's flesh and keeping it after their death is a bit ghoulish. We all get to decide where and how we're interred, even if that decision is to express indifference.

To the heirs of Mrs. Lacks' genome, whom it could be argued inherit the responsibility of stewardship of their mother's flesh, this issue is very much alive, and with advances in genomics, the privacy question for these descendants is very real.

Mrs. Lacks' genomic information can tell us a great deal about her descendants, and publishing it, as a group did recently is a double ethical lapse. First the family should be allowed to share in the decisions about her genome, using their best knowledge of her wishes. A genome is analogous to a diary in that it contains a great deal of personal information that does not automatically become property of the community after death.

The other lapse, as Rebecca Skloot pointed out in her Times piece is that Lacks' genomic data is the family's genomic data. It can tell us things about her descendants that they may wish to control. This information does not belong to all of us, as, say, physics hypotheses do. It is personal information, and it's multigenerational nature should give us all pause.

This new chapter in the story of a woman long dead continues to teach us about medical ethics and about our societal values. Hopefully we can take a breath, step back, and discuss. Ethics are most useful in the hard cases. This is one of the tough ones, making it particularly important.

Read more in The Immortal Life of Henrietta Lacks, a book I strongly recommend.

Peter A. Lipson, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. After graduating from Rush Medical College in Chicago, he completed his internal medicine residency at Northwestern Memorial Hospital. This post first appeared at his blog at Forbes. His blog, which has been around in various forms since 2007, offers "musings on the intersection of science, medicine, and culture." His writing focuses on the difference between science-based medicine and "everything else," but also speaks to the day-to-day practice of medicine, fatherhood, and whatever else migrates from his head to his keyboard.