Why ‘titanic’ issues related to DNA privacy must be addressed for us to enjoy the benefits of personal genomics revolution

personal genomics and health

An astonishing panel of world-leading researchers and business leaders in personal genomes revealed the titanic issues facing the genomics sector at the Wellcome Genome Campus.

So what did we learn? We’re now on the journey of getting humanity’s genome sequenced. There’s no agreed gold standard for consumers. And there is a danger that there will be those who have access to whole genome sequencing – with all the benefits that accrue from understanding your likely medical history at the start of your life – and the DNA have-nots who can’t afford sequencing or cures.

But also, the NHS is the one organisation in the world that is actually democratising genomic testing and by doing so it is our best chance of having a ‘proper’ genetic counselling service. Without the NHS the sector would be in greater danger of more extensive commercialisation by big data.

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For this journey to work, individuals have to want their genome sequenced voluntarily. Some may not want to know whether they’ll be more likely to die of heart disease, cancer or dementia. Others may think they want to know but then won’t be able to handle the consequences.

Related article:  What if you think you're Black, but your DNA test disagrees?

Read full, original post: ‘Could your DNA data be used for Facebook ads?’ Wellcome genetics panel asked

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