Wednesday, 9 September 2015

Ethics is hard

I've used that phrase before but in a rather throw-away line in the context of being a better doctor.  The fact that science is hard is a more systemic trope on The Blob. (About ten) years ago, I was pushing the frontiers of science in St Vincent's Hospital Dublin although I was formally employed by UCD, the university 2km up the road.  Bizarrely for a hospital research centre we were analysing the chicken Gallus gallus genome.  As a well-brought up chap who didn't turn out to be a total cad and bounder I thought of myself as reasonably ethical in my thought and practice. In fact I reckoned that ethics required nothing more than a kind heart and common sense. UCD and other institutions were at the time trying to formalise their take on ethics w.r.t., say, animals in research, exploitation of natural resources and the position of women in the work-place. The University Committee of Bioethics was a body that was wrestling with these issues. Although I don't think anyone on the committee had formal training in ethics, I believe they co-opted a token philosopher to the committee with a that will do shrug. As well as generating a lot of documents and forms to be filled in, they also produced an Ethics Quiz which set out a number of hypothetical scenarios and asked which of several actions would be considered 'ethical' or not. The quiz was a bit like the not-for-resusc situations listed in the advanced health care directive published at about the same time by the Irish Council for Bioethics. These were fine if you were comatose from kidney failure or a car-crash but less useful if you were intubated under circumstances unimagined by the ICfB as they sat round the table waiting for the coffee to appear.

I took my kind-heart-and-common-sense to the Ethics Quiz and motored confidently through the questions expecting to score 10/10. When I looked at the answers, I found I'd only clocked 60-70%: not a total monster like Amon Goeth, but not the archangel Gabriel either. One wrong answer was to the question. "You are running a study, with informed consent, to discover a cure for stomach cancer.  From each of your cases and controls you have taken 10ml of blood and used only 1ml of this for extracting DNA.  Is it okay to use another 1ml of those bloods for research into a cure for kidney cancer?".  As one who seemed to be giving 10ml of blood to students about once a month, I felt no sense of ownership about the 9ml and thought it might as well be used for any other project on the research floor. So my answer to the question was an emphatic "Yes". And I was wrong.

It's a slippery slope argument. Just because it's lying there in the fridge doesn't mean that you-the-scientist can decant the stuff for any old idea you may have. This was about ten years after a scandal had been revealed in the National Children's Hospital involving the children who had, despite the best efforts of everyone, died under knife.  The distraught parents had buried a pathetic white box that was lighter by a couple of kidneys, the lungs and a tiny heart (oh yes, Smithers, take the thymus and the pancreas as well) which were all in glass bottles full of formalin in a store-room behind the pathology lab in the hospital. The consultants involved had reckoned that these organs might be useful for teaching or research and, with the blunted affect all to common among scientists, had thought "The poor child is dead, ain't going to need those kidneys again". Thus my blood is still my blood even if it is long separated from my circulatory system and in a vial in a fridge in a place I worked ten years ago.  If I said it could be used in the particular way identified of the consent form, that is all it can be used for.

This all came to a head in the case of Henrietta Lacks, a poor black woman who died of cervical cancer in 1951 but not before the consultant George Otto Gey at Johns Hopkins University had whipped out a biopsy from the tumour and established the first 'immortal' human cell line - HeLa cells. HeLa cells have been very widely used for all sorts of biomedical research.  The urban legend that 50 million tons of the stuff are distributed across hospitals and laboratories is, in two words, in credible and effectively scotched here. Rebecca Skloot wrote up the story as The Immortal Life of Henrietta Lacks, which has been widely mis-represented; as have the motives and actions of Ms Lacks surviving descendants and collateral relatives. It is easy to say/think that these rellies have no locus standi about the cell line and certainly no rights to royalties for the use of Aunt Henrietta's cells.  But there is an issue of privacy: HeLa cells each have DNA which has a lot in common with the DNA of these descendant relatives and "anyone" can determine genetic pre-dispositions to a rake of diseases from analysing the said DNA.  The Lacks rellies can be fingered as likely (or indeed unlikely) to get breast (or indeed cervical) cancer or retinitis pigmentosa or Huntington's chorea.  All of which information is of interest to employers and insurers.

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