I’m engrossed in a book I’ve been meaning to read for ages, Rebecca Skloot’s engaging and fascinating The Immortal Life of Henrietta Lacks. It’s a scientific detective story, a family history, and illustrates the queasy ethical relationship between medical research and the patients who are the subjects of that work.
The book tells the story of Henrietta, a black woman from small town tobacco-growing Virginia, who died of cervical cancer in 1951. Before her death, her doctors had removed a sample of her tumour, without her knowledge, for research into cell culture happening at the same hospital. Her cells – labelled as HeLa – became through some quirk of fate the single biggest-growing cell line in history, the first to continue to grow vigorously in a lab, and hence played an enormous part in medical history, from the development of the polio vaccine to gene mapping.
Henrietta’s family, meanwhile, struggled with poverty, violence, illness and saw none of the profits being made on the back of her cells. They were left almost entirely ignorant of what had happened, and were further exploited by researchers who took their own blood samples for further research into their mothers’ cells’ genetic make-up, again without ensuring the family fully understood what was happening to them.
A chapter where Henrietta’s daughter Deborah recounts phoning the hospital every day, for the results of her ‘cancer tests’ – which was her understanding of why she’d had blood tests done – is almost unbearable. So is the section where Henrietta’s husband admits he won’t accept medical treatment for his gangrenous feet, because of his suspicion over what happened to his wife.
Unexpectedly, the book has brought home to me something I take for granted in my everyday working life – the vital importance of properly informed consent to medical procedures. With the BMJ Group’s Best Health team of writers, I produce and edit evidence-based patient information, seeking to ensure that anyone who’s given our leaflets or referred to our website has a decent chance of understanding their condition, and what the treatments or tests they’re being offered can and can’t do.
Our recent work has taken us into the field of Patient Decision Aids, online information products designed to help people facing choices about medical treatment to work out what treatment is right for them as an individual. While doctors may be experts in what treatments can do, patients are experts in what they need, and their own values and priorities. Only a patient can decide whether the side effects of the medicine, or the risks of the surgery, or the inconvenience of the hospital appointments, are worth it for them as an individual.
The whole field has moved so far since 1951, thank goodness, yet it’s not unusual to meet doctors who curl their lips at the mention of shared decision making, or tell you that patients simply don’t want to make their own decisions – they’d rather the doctor did that for them. I’m guessing that these are patients who haven’t had their options properly explained to them, who don’t realise they do have a choice, or whose doctors have baffled them with technical terms and biomedical explanations, rather than plainly setting out the choices and likely consequences.
In a telling section of the book, Rebecca Skloot interviews one of the doctors who took blood from the Lacks family in 1973. The doctor says she told them: ‘We come to draw blood to get HLA androgen, we do genetic marker profile because we can deduce a lot of Henrietta Lacks genotype from the children and the husband’. What was that supposed to mean to a dirt-poor, barely educated man whose wife had died 20 years ago? As Skloot says, they agreed because that’s what you did in those days, when doctors asked you to do something.
That’s not good enough any more. I hope it doesn’t happen any more, but I wouldn’t bet on it. I hope the work we’re doing at Best Health goes some way to shift the balance.