American medicine & American red-tape

By Razib Khan | February 13, 2012 6:08 pm

I just attended a presentation where a researcher outlined how epigenomics could help patients with various grave illnesses. Normally I don’t focus on human medical genetics too much because it always depresses me. I don’t understand how medical geneticists don’t start wondering what hidden disease everyone around them has. In any case the researcher outlined how epigenomic information allowed for better treatment, so as to extend the lives of patients. All well and good. But then one individual in the audience began asking pointed questions as to the medical ethics of the enterprise, and whether the researcher had cleared some legally sanctioned hurdles. More specifically, there was a question whether exploring someone’s epigenomic profile might expose private information of their relatives! (because relatives share epigenomic and genomic profiles to some extent)

Frankly I began to get enraged at this point. People are suffering from terminal illnesses, and considerations of the genetic privacy of their near relatives are looming large? Seriously? The reality is that manifestation of a disease itself gives one information about the risks of their relatives. In any case, the researcher admitted that further progress in this area is probably going to be due to the investments of wealthy individuals (e.g., people like Steve Jobs who have illnesses) as well as outside of the United States. You’re #1 America!

CATEGORIZED UNDER: Health, Human Genetics, Human Genomics
MORE ABOUT: Medicine
  • Glidingpig

    Ok, I think you got a bit hot and bothered unnecessarily. It was a presentation, not life and death, this is where you should discuss the implications of these things. If people do not bring it up there, it will be a matter of life or death, and do you want it to get in the way of treatment then?

    Now I stand where my data is mine, and I have the right to release it. If you share some data, that is the way it is.

  • Razib Khan

    your comment read like it was popped out by google translate. be more clear in the future.

  • Neil

    Is this just a further slice of the debate on “incidental” findings?

  • marcel

    Razib – why the use of the 2nd person form in the last line?

  • Gary B

    I think the second-party privacy issue is one that needs to be worked through. A rather stupid contrived scenario: let’s say I have terminal disease X, that is genetically determined. There are two forms of the disease – I have the one (say from two copies of the gene) that kills you fairly soon. My brother does not know it, but he has the version that doesn’t kill you right away but costs a million dollars a year to treat. And if the company he works for finds out that you have the disease, they are likely to fire him to avoid the load on their insurance policy. Once he is diagnosed, they can’t do that so easily. But if the news about you gets out, they can come up with some phony excuse.

    And, of course, he may have been tested and found to be free of the disease, but might still get fired. Or his fiancee may dump him just in case. Things happen.

    Also, using the Huntington’s chorea as another example, IIRC it’s been shown that a significant percentage of those who are in the same family opt not to get tested, because they don’t want to know.

    So, yes in some ideal world, it might be otherwise but in this world this privacy question must be addressed. It’s a classic ethics question and I do not think the answer is clear. I would argue that it may depend quite a bit on the specifics of the individual diseases. In real life humans have had to make tough life-and-death decisions throughout and before history, balancing things that we wish not to have to balance.

  • Grey

    Last ditch defense.


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About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at


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