Infant Blood Samples Raise Questions of Privacy - page 2

Matthew Brzica and his wife hardly noticed when the hospital took a few drops of blood from each of their four newborn children for routine genetic testing. But then they discovered that the state... Read More

  1. by   nizhoni
    A few years ago I had the opportunity to attend a workshop facilitated by the director of our state's agency that performs newborn genetic screening. That was the first time we learned (1) that the agency had been keeping these samples for years and intended to maintain the information in perpetuity; and (2) there is a nationwide plan to share this information (he declined to tell us for what purposes). My favorite part was when he assured me in answer to my specific question that the data in their facility is "completely hacker-proof." Clearly he was either lying to me (bad) or ignorant about the vulnerability of government computer databases (worse).

    This long history of performing genetic screening without full disclosure is a major issue with many of my midwifery patients. With all the energy we expend to ensure patients' privacy via HIPAA laws, it is unconscionable that state agencies can do whatsoever they will with babies' DNA without full disclosure. Many parents are opting out of genetic screening solely *because* of this issue. If we have to comply, then they get to comply. Simple as that.
    Last edit by nizhoni on Jul 4, '09
  2. by   ukraina
    Quote from 8flood8
    what if they have your blood and they find out that you have some rare genetic disease and then they use this information to bar you from having health insurance because its gonna be too costly to take care of you?


    informed consent! patients right to privacy. it doesn't get any simpler, we are not uptight, we want our rights.


    ------------

    thanks for bringing up this important point to our attention. i'd rather be suspicious and alert, than be naive or indifferent. i am very afraid of being forced to give up my freedom or decisions as a us citizen as a result of many americans who think there is nothing to worry about or nothing we can do to prevent the government control on us healthcare. when i brought the similar point before one of my friend one time, i was called a "negative", but is the reality is already dangerous and negative, would someone who loves his/her country choose not to respond to it? i am an immigrant caring a lot for freedom and options we have in us and am against letting it taken away from us.
    thanks for reading all this. may god preserve and improve us the way he thinks it needs it.
  3. by   ukraina
    I wonder, do they keep infant blood samples in Nevada as well? if yes, I'd rahter go through much more pain and give birth to my future baby at home.
  4. by   KYCNM
    Quote from crazyNursingStudent1
    I really don't see any problems with this and I wish people would stop being so uptight. This is the reason why it is so hard to move ahead in this country in scinetific research. I mean what are they going to do with the patch of blood that is going to harm their kid????

    The important thing about DNA testing is that it be accompanied by genetic counseling WHETHER there is a problem or not.
    Further,

    On May 21st, 2008, President Bush signed into law the Genetic Information Nondiscrimination Act (GINA), which prohibits U.S. insurance companies and employers from discriminating on the basis of information derived from genetic tests. GINA passed both houses of Congress with a vote in the U.S. House of Representatives of 414 to 1. The bill had passed in the House twice before, most recently last year when the vote was 420 to 3. The U.S. Senate unamiously passed the current bill after compromises were reached on areas of disagreement that had held up its passage for several months.
    GINA protects Americans from discrimination based on information derived from genetic tests. It forbids insurance companies from discriminating through reduced coverage or pricing and prohibits employers from making adverse employment decisions based on a person's genetic code. In addition, insurers and employers are not allowed under the law to request or demand a genetic test.


    Do you believe the legislators would pass such laws if there was not already evidence that insurers had abused access to such information?

    If you had diabetes in your family, would you like to be told when you accept your first position as an RN that the insurance available to other employees was not available to you because you have a history of diabetes?

    Sorry, but past history gives evidence to misuse of information that 3rd parties have access to that people may not even know is out there.
  5. by   Dianacabana
    Quote from perthisa
    Interesting my children were all born in Minnesota. I feel kind of deceived. If I had been asked, I probably would have said I don't care. The state doing this sort of thing without informed consent makes me wonder what else they do without asking us.
    I feel the same way--I'm happy to help with research if it is a means of helping others. But at least ASK me first!
  6. by   tempest
    Quote from crazyNursingStudent1
    I really don't see any problems with this and I wish people would stop being so uptight. This is the reason why it is so hard to move ahead in this country in scinetific research. I mean what are they going to do with the patch of blood that is going to harm their kid????
    how about sharing that info with insurance companies for starters. If that kid has any genetic disposition to any host of diseases, they could be denied coverage.
  7. by   morte
    Quote from KYCNM
    The important thing about DNA testing is that it be accompanied by genetic counseling WHETHER there is a problem or not.
    Further,

    On May 21st, 2008, President Bush signed into law the Genetic Information Nondiscrimination Act (GINA), which prohibits U.S. insurance companies and employers from discriminating on the basis of information derived from genetic tests. GINA passed both houses of Congress with a vote in the U.S. House of Representatives of 414 to 1. The bill had passed in the House twice before, most recently last year when the vote was 420 to 3. The U.S. Senate unamiously passed the current bill after compromises were reached on areas of disagreement that had held up its passage for several months.
    GINA protects Americans from discrimination based on information derived from genetic tests. It forbids insurance companies from discriminating through reduced coverage or pricing and prohibits employers from making adverse employment decisions based on a person's genetic code. In addition, insurers and employers are not allowed under the law to request or demand a genetic test.


    Do you believe the legislators would pass such laws if there was not already evidence that insurers had abused access to such information?

    If you had diabetes in your family, would you like to be told when you accept your first position as an RN that the insurance available to other employees was not available to you because you have a history of diabetes?

    Sorry, but past history gives evidence to misuse of information that 3rd parties have access to that people may not even know is out there.
    and i have no doubt that it will continue, i dont think there are enough laws or enforcers there of, to prevent it
    so the safest thing is to not have that info on your records

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