Selling our genes for medical research

EARLY in 1951, a young woman called Henrietta Lacks presented to Baltimore’s Johns Hopkins Hospital, one of the few hospitals in the region that would treat African American patients. Sex was painful, she told doctors, and she’d been bleeding unpredictably.

It didn’t take long for the medical team to work out that Lacks had a particularly aggressive cervical cancer, which they treated with the standard radium therapy of the time.

Lacks and her husband were tobacco farmers, struggling to support five young children on land once worked by their slave ancestors. With little formal education, they probably didn’t understand much about the medical system they’d been plunged into and, in any case, it didn’t occur to anybody to ask Lacks’ permission, or even to tell her, before removing cells from her tumour for research purposes.

Researchers at Johns Hopkins had for some time been trying to propagate cancer cells in the lab, only to see batch after batch die in the Petri dish.

Lacks’ cells, though, were different. Like the tumour they were taken from, they multiplied ferociously, becoming, as science writer Rebecca Skloot has put it, “the first immortal human cells”.

Skloot’s book about Lacks, and the “HeLa cells” derived from her tumour, illuminates the racial politics of mid-20th century America, but also the murky world of early genetic research.

Since their first propagation back in 1951, HeLa cells have played a vital role in research into cancer, viruses and the effects of radiation, and were key to the development of the polio vaccine. It’s been suggested that they laid the groundwork for today’s multibillion-dollar biotech industry, and they have, as Skloot puts it, been “bought and sold by the billions”.

None of that helped Lacks, who died of cervical cancer just 8 months after the original diagnosis. It was two decades before her children learned of the riches their mother had unknowingly bequeathed. How, they wondered, when their mother had been so important to the development of modern medicine, was it they could not even afford health insurance?

The story of Henrietta Lacks may seem to belong to a different age, but questions around ownership of genetic material are still with us.

While Lacks was exploited without her knowledge or consent, these days we are more complicit in our own exploitation, freely giving our most private data to commercial organisations. We may be horrified at the thought of how much corporations such as Google and Facebook know about us, but so seductive are these online platforms that we continue to hand over our information regardless.

And an increasing number of us are sharing not just photos of what we did on the weekend but also our DNA.

Various companies have made profitable businesses out of low-cost DNA tests promising to provide the inside scoop on our genes, whether it’s to reveal our disease susceptibility, the origins of our ancestors, or more tenuous characteristics.

“Now you can eat a healthy diet best suited to your genetic makeup,” promises testing company Helix. “Turn DNA insights into easy-to-make food decisions for balanced meals that make your body happy.”

So genetic testing will reveal whether it’s okay to have pizza on Friday night? Maybe they could integrate their test reporting with food delivery services to offer genotype-specific menus.

What many consumers may not realise is that the business model for all this is partly based on selling (de-identified) data to biotech companies for use in research.

It’s hugely valuable information because, alongside the DNA results, companies also ask many questions about participants’ health and lifestyle, potentially allowing researchers to spot associations between a range of (albeit self-reported) health variables and particular genotypes.

Major pharmaceutical companies have certainly been prepared to offer big bucks for the information, as Wired makes clear, responding to GlaxoSmithKline’s recent acquisition of a US$300 million stake in genetic testing company 23andMe.

Unlike Henrietta Lacks, customers of 23andMe are asked to consent to their information being shared for research purposes and, again according to Wired, 80% of them do.

Not having purchased a DNA test from 23andMe, or anyone else, I can’t comment on the nature of the consent process, but I somehow doubt it meets the standards required in more conventional medical research.

After all, how many of us actually read terms and conditions these days before we click on “agree”?

If all the information we so willingly hand over leads to marvellous new treatments, that’s all well and good, but are we really happy for commercial organisations to have so much control over our data? And how much confidence can we have in the security of the data, in claims it can never be connected back to us?

In return for the useful services it provides, we have already given Google the right to know where our bodies are in physical space and what questions our brains want answered at any given time. If their next move is into DNA testing, it might be time to get nervous.

Jane McCredie is a Sydney-based health and science writer and editor.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or MJA InSight unless that is so stated.

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