You Thought Telemarketers Were Bad…

…wait until the medical research community finds out you’re one of the Thirteen:

There are 13 people in the world who might be able to provide life-saving treatments for some of the world’s most damaging diseases — but doctors can’t find them.

The 13, who have been named “genetic superheroes”, have remained healthy despite carrying the same genetic mutations that usually lead to childhood diseases. Each of them should have been susceptible to Mendelian disorders such as cystic fibrosis, which begin in early childhood as the result of a defect in a gene.

But those 13 people didn’t have the usually inevitable illnesses that would be associated with their genetic make-up. They are apparently completely unaffected by their problem genes.

Which makes them very valuable to doctors working on research projects.

The only problem now is that scientists have no idea who those people are. They were identified by scientists during a study of more than half a million people’s DNA — but the researchers only had access to their genes, not the people themselves.

Maybe that’s for the best. People who are happy to donate their DNA for research might not be so happy to be on the receiving end of constant contact and requests for more and more time for research projects.

The researchers got full consent to use the genes, but not to talk to the people involved.

“”There’s an important lesson here for genome scientists around the world: the value of any project becomes exponentially greater when informed consent policies allow other scientists to reach out to the original study participants,” said Stephen Friend, the other Resilience Project co-founder.

“”If we could contact these 13 people, we might be even closer to finding natural protections against disease. We anticipate launching a prospective study in the future that will include a more broadly useful consent policy.”

I’d advise anyone who takes part in any such study to read the small print carefully, if they don’t want to be harassed in future.

It’s increasingly the case that the medical profession view us as belonging to the state, so there’s no need to further encourage them in that belief.

3 comments for “You Thought Telemarketers Were Bad…

  1. Hereward Unbowed.
    April 22, 2016 at 11:19 am

    I can see the very great potential in genetic sequencing, the benefits boggle the mind. Though, I cannot ever foresee the very improbability of immortality. Facts are that, mankind, and its individuals, his or her longevity could be eventually extended to double ‘three score and ten’ – when you read about the advances made in medical science and particularly to stem cell research, the prevention of brain debilitation notwithstanding – staying healthy and younger for longer – is not such a remote prospect.

    And then, there are; ethics, rationale, moral conduct and its philosophy. Truth be told, mankind has developed faster, too fast in some areas and we are too underdeveloped for to fathom the infinity of its prospectus – medical advances especially. The possibilities for evils done, are greater than the all else – besides, imho.

    It is another exquisite irony, for surely God has a sense of but very dark humour.

    As mankind teeters, tottering on the edge of the abyss. We could do so much and yet the great and the good, have begun not to believe and thus to, take us to a dark place wherein some plethora of naysaying, constant war and puritanical ideologies are being wrought upon us, and where science will be parked forever.
    An elite, who are given to absolutely stamping out the enlightenment – the age of reason which brought us virtually, metaphorically, geologically speaking up the steps of advancement from apes, to hunter gatherers, to golden almost unbounded opportunity. Life, its happy circumstance where we could all live full lives untroubled by most of what nature can throw at us, I did say “most” – there.

    Whether it is, through Islam or, the green lunacy, either way, it’s back to the dark ages.

    • April 24, 2016 at 6:34 am

      ‘Things fall apart, the centre cannot hold’ indeed…

  2. Hereward Unbowed.
    April 22, 2016 at 11:26 am

    Pertaining to the above post, I should also have said, Hussein Obama will argue for the end of the Enlightenment – this very day.

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