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All Shook Up: Channel 4 raises genetic privacy issues trying to be “dead famous”

Posted on Apr 01, 2014 by Dr. Julie Nixon  | Tags: dead famous DNA, genetic privacy, genome sequencing, data protection  | 0 Comments

By Julie Nixon

Channel 4 premiered a new show last week, “Dead Famous DNA” where presenter Mark Evans tracks down body parts of the “dead famous” so DNA can be extracted and analysed. The first show saw scientists supposedly sequence and analyse Elvis’s genome, and revealed that the “King” carried a genetic variant which could have led to a predisposition to heart muscle disease. Apart from the gaping holes present in the scientific analysis (more on that later), I was left with questions regarding the ethical and privacy issues raised by this project.

Whose DNA is it anyway?

Apart from Elvis, episode 1 showed Evans tracking down body parts from Hitler and George III. The latter proved a dead end (pardon the pun) when a sample of hair proved to be a wig. Hitler’s barber was a possible source of hair from the dictator, the story goes the barber wore double sided sticky tape on his shoes to harvest the hairs. But this of course immediately raises concerns that the sample might contain hair from other individuals. Genomic DNA was analysed and sequenced from a sample of hair claimed to be from Elvis, but rather than showing basic analysis for gender and ethnicity, the show immediately went to the “sexier” analysis, such as looking for genetic variants for obesity and heart disease. I would have been more convinced if the scientists could have shown the sample came from someone with a Native American background like Presley.

Last year I wrote about genetic privacy concerns after the descendants of Henrietta Lacks objected to the sequencing of genomic DNA from a cell line derived from Mrs Lacks’s cervical tumour. As Channel 4 has demonstrated, it is relatively easy to analyse data for genetic markers for human disease, possibly inherited by close relatives. I would not have been surprised if there had been some comments from the Presley family regarding the analysis shown on Channel 4, but they may also be somewhat sceptical as to the origin of the “Elvis” genomic DNA. But bear in mind if the sample is genuine then half of Lisa-Marie Presley’s genome will be comprised from the genetic material analysed, and she may have inherited some of the genetic variants highlighted in the show.

Devil in Disguise?

While we live in an era of breakthrough science, with the $1,000 genome supposedly obtainable, just because we can carry out whole genome analysis doesn’t mean we always should. There should be a research or medical purpose behind genome sequencing, and the public should be able to trust the research community that their data will be used in the most respectful and productive manner possible. There should be robust informed consent processes, with strict data security and access provisions. I think it is only a matter of time that we see the first “test” cases over the misuse of genetic information obtained from saliva on a coffee cup, or as we have seen above, an enterprising barber. Our laws should allow for valuable research with transparent processes but at the same time protect our genetic privacy.

Julie

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