BioWorld Perspectives Contributing Writer

Since nothing stirs the faithful quite so much as the perception of persecution, the anti-science forces have been freshly energized by The Lancet's retraction  of a controversial 1998 paper suggesting a link between the MMR vaccine and autism.

Subsequent studies – dozens of them – have found no link between them. Now, with The Lancet's retraction, the scientific waters are clearer, but the emotional waters are as muddy as ever. Take, for example, this comment from Jody, posted in response to an LA Times blog item on The Lancet retraction:

At 18 mos my son was normal by all metrics. He could catch a ball and throw. [...] After his MMR at 19 mos, he could no longer speak, babble, or come close to playing catch. I know it's not a double blind study but the big government, corporate welfare, media collusion will never change my mind.

Anyone with even an elementary grasp of science or logic would see the fallacy in that reasoning. Hell – even Jody sees it. But anyone who's watched a loved one suffer can understand how attractive such "logic" can be.

I can't help but have some sympathy for Jody and other parents who, faced with a neurological tragedy, need someone or something to blame – a cause of all that misery (sometimes translated into a political cause). Coincidence certainly can look an awful lot like causality, especially in a small sample – and even more so when that small sample comprises your child.

The notion that "there are no coincidences" is powerful. Sometimes I think I might like to visit that world of no coincidences. Where everything has the meaning I assign it, where every connection is self-evident, sans nuance, sans subtext.

But I wouldn't want to live there. Not that it matters, of course: The real world is full of coincidences, rife with red herrings and missed connections.

When Personal Agendas Confront Science
The Lancet fiasco – or rather, the public response to it – reminds us of what happens when the personal – and the personal agenda – confronts the science. The paper's author, Andrew Wakefield, has defended his work and is keeping the debate alive. He is a hero to parents who believe in the MMR connection.

Wakefield's critics, meanwhile, say he not only did bad science; he behaved badly. He allegedly ordered unnecessary invasive tests (including colonoscopies and spinal taps!) on children without proper ethical approval. If so, that's a scientific, personal and ethical failure.

Of course, medical researchers routinely do extra tests and procedures on research subjects in order to collect the full spectrum of data needed for peer or FDA review. Blood and tissue samples are often a part of the package. With proper oversight and consent, this is all perfectly ethical – indeed, it's necessary for medical progress.

But where is that line? When is it not perfectly ethical?

Immortal Cells, Immoral Story?
This brings me to the story of Henrietta Lacks (of the HeLa cell line used in research). Lacks' saga – in the media spotlight again, thanks to the publication of a new book – reminds us of what happens when we forget about the person behind the cells, the disease, the genes.

In The Immortal Life of Henrietta Lacks, Rebecca Skloot tells Mrs. Lacks', and her cells', story – and the casual indignity with which she, her cells and her family were treated.

Here's the short version: In 1951, Henrietta Lacks was diagnosed with terminal cervical cancer. She was treated at Johns Hopkins, where doctors snipped cells from her cervix – without permission, of course, in an era before modern consent forms and protocols. Lacks, 31, died that year, but the snipped cervical cells did not. In fact, they became the first immortal human cells ever grown in a laboratory.

Since then, HeLa cells have been cultured and used in all manner of experiments. Lacks' cells were commercialized, and they've earned millions for the medical researchers who patented her tissue.

From Skloot's book:

And Lacks' family? Not only did they receive nothing; they didn't even know about the cultures until more than two decades after her death. In an interview with Smithsonian magazine, Skloot recounts how the family found out:

Of everything I've read about, perhaps this episode haunts me the most. Well, this and the idea that while the cells were generating millions, Henrietta Lack's family didn't have health coverage.

Given the controversies surrounding who owns the rights to one's own biological material, it's a delicate and uncomfortable issue. But while we may have no clarity on the fine points of ownership and compensation, I think it's pretty clear that something went wrong. Someone – or a lot of someones – forgot that the cells belonged to a human being. There's a lesson there.

Skloot spelled it out in her Smithsonian magazine interview:

Balancing the Clinical with the Human(e)
At first blush, it may be hard to see what these two stories have in common. A lack of objectivity allows Jody (and thousands of other parents) to draw an unscientific – even dangerous – conclusion about the MMR vaccine. It's so profoundly personal that there's no room for scientific rigor.

In contrast, the Henrietta Lacks story arises from the triumph of the objective over the subjective, the impersonal over the personal. Plenty of scientific rigor, but precious little humanity.

It's easy to be distressed about Jody ignoring the objective truth, opting for the purely subjective. But is the opposite any better? After all, that cohort is made up of individual patients. Those cell lines came from human beings. We ignore subjective humanity at our peril.

And that brings us back to ethics. It helps build a bridge between the subjective and the objective, between the clinical and the human. So what we do, from making scientific advances to marketing them to covering them, needs to be informed by these ethical considerations. And we need to be reminded, from time to time: We sometimes ignore the personal in the pursuit of better science, but we must never be allowed to forget about it.

Published: March 4, 2010