Carter Harkins

Chief Storyteller, Harkins Creative

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If the Genomic Revolution is upon us, what basic human rights will this challenge?

Advances in science and medicine have often brought complicated moral and ethical questions to light. Will personal genomic mapping become the civil and human rights issue of the coming decade? What issues will we face very soon?

  • Sep 20 2011: What about the opposite question: what basic human rights will the Genomic Revolution enable?
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      Sep 20 2011: Another great question. Insofar as the mapping technologies become ubiquitous and cost-effective medical tools, we would certainly see the potential for healthier, longer lives.

      Good friends of mine have a daughter who, just last week, was conclusively diagnosed with (through the identification of the genetic marker for) CCHS, a very rare and potentially lethal genetic syndrome. As a result of a positive diagnosis, which will require special care and ventilation equipment, they have discovered they are entitled to a number of things that anything less than conclusive genomic evidence would not allow for, such as being placed on the local power utility's "Red Zone" list, in order to make sure they have uninterrupted power and backup power, dedicated, on-site nursing staff available throughout the child's school years, as well as additional things. Whether these things fall under the category of "basic human rights", I will leave it to others to say. But I am amazed at how responsive our community has been to this situation.
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    Sep 30 2011: Carter I ve read your profile and I know you r a story teller and I am not sure if right now we are doing the same thing which is writing a script about the world with mutated Gens , not like X-Men but something much more radical.

    Now Mr.Resnicks presentation sparked so many new idea in my mind and if this script sees the light of the day someday I should thank him a lot more :)

    so how about you ? are we in the same boat ?
  • Josh E

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    Sep 28 2011: This Genome Revolution brings many problems to the table-
    Can you kill a baby because it's genome shows a rare disease?
    If it comes to cloning, who is to say to scientists that a defect in their methods, i.e. a baby who's genetic code is different from what the scientists wanted, is still a human being worthy of life- to not just erase it as if it is another experiment?
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    Sep 27 2011: The only issue that humanity will face in the future is agreeing with each other. Some people believe that is impossible. This universe is infinite therefore nothing is impossible. The only limitations are what is true and untrue. Truth is what everyone can agree on as sure as it is given 5=5, true or false? Here is an online website dedicated to truth and discussion please friends read the book and get involved things will change be a part of it! If we embody truth the rest will take care of itself. That is the Truth. Thank you for reading my post friends =]
    The truth is incontrovertible; malice may attack it, ignorance may deride it, but in the end; there it is. - Winston Churchill
  • Sep 22 2011: The idea of genomes falls under the right to know clause of intelligent beings but indeed how much would we know my right to know also points to SPEC MRI's as a great revealer of functional accomplishment. The genome is a most interesting part of the puzzle glad to have had a class in college a few years ago but really we are but scratching the surface.
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    Sep 20 2011: When we look at science we always look at two faces of a coin, one good and one evil. Science as a method being equal, it is the uses that it is put to that defines the greater outcome. Nuclear fusion and fission created both nuclear plants and nuclear bombs, and there are of course many other examples.

    It will all depend on who gets this power, and as it turns out, the global superpowers always have first access to the latest scientific inventions. Now it will up to that country to decide to what use to put it. Genome mapping, once fully done, will be a minefield of ethical concerns, many of which Richard mentions.

    What is interesting in this regard is that all the problems are related to economics and geopolitics, and I'm afraid that it will come down to the method in which the maximum profit or political influence is achievable. Human rights and ethical concerns have been and still are regularly flouted for economic motives and there is no reason to believe that it will change anytime soon. The only possible positive scenario I see is for governments to enforce strict decisions on the usage and applications of these methods after a national consensus and then stick to it without bowing to economic pressures.
  • Sep 19 2011: I love Mark Meijer's response.

    More specific ideas about the implications around basic human rights (and some privileges as well):

    Repeatability. Different runs of the same genome can produce different results. Although this problem is rapidly diminishing due to advances in technology, everyone needs to make sure they know this. The state of the art in 2011 is not perfection.

    Interpretability. Every genome has 3,000,000 variants and we only understand the clinical significance of a few thousand at most. Genomes in the hands of the untrained can cause panic. Having a genetic predisposition is not the same as having a disease. There are websites that will tell a consumer directly what the likelihood of their developing diabetes is based on their genome. This Is Very Bad.

    Neo-natal rights. What right, if any, does an unborn child have after the parents have diagnosed that it has a rare genetic disorder in the womb?

    Privacy. Who gets my genome and what can they use it for?

    Insurance. Can I be denied Life Insurance, Hazard Insurance, or indeed, even Medical Insurance based on genetic pre-disposition? See GINA.

    Politics. Genomes as a political weapon? (Mine is better than yours, etc.)

    The "Incidentaloma": what ethical obligation, if any, does the medical practitioner have to inform a patient about incidental findings? Today if you get an MRI for a herniated disc and they find a spot on your kidney, the radiologist has to inform. Well, if I have cancer and my genome is sequenced, does the clinical geneticist have to tell me that they noticed I am a carrier for Parkinson's? What if I didn't want to know? Major implications for my sister too - she didn't ask for any of this but she shares half of my genome.

    -Richard Resnick
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      Sep 19 2011: Mr. Resnick, Thanks for a great response (and a great talk!). This has sparked an interesting line of thought for me. As we increasingly rely on the genomic lens to see and interpret our lives, the very stories we have used to understand our world and relationships will be challenged. Legislation is notoriously incapable of keeping pace with technology's implications (Is GINA enough?), and I already wonder if personal genome mapping may create a plausible social basis for discrimination, this time legitimized not by religion or creed, but by science. Much to consider and engage with around this topic. Thanks again.

      -Carter Harkins
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          Sep 23 2011: Very. "Gattaca" is always the first thing that pops into my mind when people discuss the ethical and social implications of genomic mapping.
    • Sep 20 2011: "Privacy. Who gets my genome and what can they use it for?"

      Mhh never thought about that. Google ads specially tailored for your genome? Anyone?
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  • Sep 19 2011: I dont think personal genomic mapping will create any bad issue.'cause it is very necassary to do someone's genomic mapping 'cause it will supply answers to many bad issues eg. human health.& further in forensics