Controversy over HeLa sequence

Kat - We're joined by science writer Nell Barrie, and the story we wanted to talk about this month was about the publication of the HeLa genome. Now, these are cancer cells that were taken from a black woman in the 1950s I think, who had a very aggressive cervical cancer and they were basically the first cell line to be grown in the lab. And now, they've just gone all over the world. That's like more volume of these cells than the poor woman who ever existed in the first place. But there's a lot of controversy around the publishing of her genome. What do you think?

Nell - Well, I think it's a really interesting story and I think probably the first time most people heard of Henrietta Lacks with the book that was published recently, looking at the history of her life, what happened to those cells after she died and how essentially, she and her family were never involved or asked for their consent in any of the research that went on. I think people were quite surprised when the genome was published because it quickly turned out that once again, they hadn't asked her family for the consent to publish this genetic data. I mean obviously, I think most people would realise now that there's some quite interesting implications there because they're publishing her entire genome which obviously, her family share quite a lot of. So the question is, whose data is this, should they have asked them, and how do we resolve these kinds of issues in the future, I guess.

Kat - This is one of the themes that was coming out of the Genetic Society Spring Meeting is that it's not just your genome. You got a bit from your mum and dad, and you're passing it onto your children as well, and even your more distant relatives down the line will share some of your genes. So, I think the idea that - could you piece together what these, what her children or her grandchildren are like from her genome is an interesting question. And some people say, "No, you can't. It's all been messed up. You can't tell." But then other people have actually done a little bit of analysis and you kind of can.

Nell - Yeah, exactly and I think there was a quite interesting point made about when we're thinking about consent for these things. For example, when you've got things like organ donation, a person can consent to organ donation and then in some situations, that can be overturned by their family because they may not be happy about that after the person has died for example. Could that be the case with this type of information? You might consent and say, "I'm happy for my genetic data to be used" but then, as you were saying, essentially it's not just your data. So, who else needs to have consent? Who else needs to be consulted? What's really coming out of this is the fact that we've got all these data, we've got all this amazing sequencing technology now, we can do this so quickly, and the kind of law and the ethics just isn't keeping up with this.

Kat - I mean, policy takes years and years to thrash out and we're just cranking out genomes at a rate of knots. Now, it was the European Molecular Biology Laboratory EMBL that published this sequence and then quietly took it down after there was quite a few complaints about it, but with regard to the question of consent and whether this was ever consented for which it wasn't consented to publish it. Back when her cells were taken, they were taken from discarded tissue from when she was operated on and there was no kind of consent back then. So legally, the researchers don't have to do this. I think they are now working with the family to try and work out how to go forward.

Nell - Yeah, it's the kind of the way they expressed it is that it's this weird kind of limbo area. So, nobody is suggesting that the researchers broke any rules at this point, but it's more about what is ethically right, what should the kind of moral standpoint be, and I suppose, it's just interesting to think about how people might get involved in this type of research in the future because what's clear is that people are really willing to take part and help and to contribute tissue to clinical trials for example, and for that to be used later on in studies. But then it's really about how you can consent and the issue about informed consent, and do you really understand what that data is going to be used for. And the researchers who are taking samples right now, they may have no idea about the potential ways that could be used say, 10 years down the line if it's been stored in a freezer or something. So, it's really this kind of evolving field and I think the fact that we haven't got kind of international laws around these things makes it really, really difficult.

Kat - Yeah, that's an area that really needs to get sorted out. And also, the fact that it isn't just your consent. It's your family too, but how do we try and sort this out without hindering research and hindering research in the future, and without invading people's privacy in a way they might not want to is really challenging issue. But yeah, thanks for mulling that over with me, cheers!

Nell - Thanks!

Kat - That's Nell Barrie, science writer.