Henrietta Lacks was no stranger to me. The person whose cancerous cells became the HeLa line – perhaps the most utilised set of biological materials in scientific history – was a clear motivation behind Scott Stern’s Biological Resource Centers: Knowledge Hubs for the Life Sciences. The contamination caused by the HeLa cells led to the need for “living libraries” to share access to biological materials and certify their quality.
But Rebecca Skloot’s treatment is as much about ‘society’ as it is about the HeLa cells themselves. Henrietta Lacks never knew what became of her cells or that they were even of use; she died well before. But they were one of the few sets of human cells to grow and to continue to grow for decades. As a result they were prime experimental material and have been used for countless breakthroughs. An amazing legacy.
The tension comes from the fact that some entities likely profited from providing her cells for research and other purposes but Lacks’ family never saw any of that and, indeed, for decades the contribution of the cells and their ‘donor’ lay unknown. The book is the story of the obvious tension. With Michael Moore like irony, Henrietta Lacks’ family could not afford the health care based on the fruits of research based on her cells. This is a ground zero controversy in the current health care debate in the US. The book weaves through the issues alongside the clear impact that the use of the cells had on the psychological health of Lacks’ children. It is masterful and compelling. It is a story of poverty in the US that makes the whole book read like a modern day Roots. I see a movie coming down the track.
But aside from the story, there is a policy issue on the table. The core issue today is property rights. Should you own your own cells and be able to exclude research on them. Scientist after scientist trotted out to explain what a disaster it would be if they had to bother with ‘permission’ let alone payment for use of someone’s cells or other materials. I don’t doubt it. It was the same issue that led to Lacks’ contribution being put under the rug for so many years. But just because one group doesn’t want something doesn’t make the argument a solid one.
The problem, I think, is that when you don’t have universal health care, that means that, if you don’t own your own biological materials, you could end up with those materials being used, for free and without permission, to develop new health treatments that you yourself cannot access. This is an issue because, when it comes down to it, you didn’t do anything to get the cells you have. Henrietta Lacks is pure luck. But then again, your risk of adverse health events is in large part pure (bad) luck. If you don’t think it is reasonable to reward someone for having ‘useful’ cells, how can you hold that onto that notion at the same time as the notion that they have to bear all the risk for if they have bad health?
If you offered anyone the deal: allow us to use your cells (etc) without permission or reward and we will give you health insurance, everyone would take that deal before the fact. It is a social contract. The problem is that in the US only one part of the social contract is in force. The other, at least up until 2014 and possibly not even then, is not. While that is the case, it seems unreasonable to not allow property rights over your own biological materials.