There is a really interesting take on the ethics of human genomics from Dienekes’ Anthropology Blog prompted by the aboriginal genome recently released. I can’t say I disagree with anything. Potential bad ethical outcomes of genetic sampling are very rarely clearly explained and just left hanging in the air as something that must be true. If 23andme and the other genomic testing companies have taught us anything it is that huge numbers of people want to know about their genomes. They are interested in their ancestry and not at all concerned by the supposed dangers of knowing something more about themselves. I remember when the southern African genomes were released seeing interviews with one guy who had been sequenced (Desmond Tutu, one of the other genomes, had gone to meet him, I seem to remember). He was really proud that his part of human diversity was being represented. Good for him. I doubt very much that this is a rare view, and I find it slightly patronising that although we know there is no real concern we assume a priori that non-Western peoples might be concerned. Do we also assume that they will be concerned photographs may steal their souls? Even if this were true don’t we have a duty to explain and teach much more than we have a duty to pander to possibly non-existent fears?
I can’t help agree but with Dienekes’ concern over the worrying power of unelected bodies to represent the community.
I am glad that the “Land and Sea Council” gave Willerslev its content. But, seriously, who are they to decide whether the hair sample should be used or not?
It could be argued that Haddon’s unknown hair donor did not authorize a particular use of his hair sample. But, it is ludicrous to expect people from the past to anticipate all the potential uses that their tissues may have in the future. Nor is there any evidence that the anonymous donor authorized some council representing 5,000 future Aboriginal Australians, including a few of his distant relatives to prevent it from being used.
I would take it even further though, in that even elected bodies such as governments do not have automatic rights to determine such ethical issues over their citizens. They are elected to collect taxes, fix roads and the like. If they do wish to set out ill-defined ‘ethical’ restrictions they should start putting them in their election manifesto immediately.
I do very little science that could be of ethical concern to anyone, yet ethics committees still manage to make my life worse. Their actions are often nonsensical, and occasionally even unethical. They often seem to be mostly constituted to protect organisations from criticism rather than to consider actual ethics. My university has ethical restrictions for all animals, not just those mandated by UK law (vertebrates). So, do we get rid of those fish parasites or not? One fish, lots of parasites, do we treat them equivalently? I love nematodes, but even I find equating them to be quite hard core ethics! I was once told that before I could run a student practical class I had to get a medical declaration from all students to their health status including infectious diseases and whether they were pregnant or not. I tried to point out that since I couldn’t use any of this information for any reason it seemed actually unethical to demand the students to tell me such personal information via these ethics forms. Appreciation of irony is not common among ethical committees.