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Re: Pros and Cons
I agree that this is a very sticky issue. Education and informed decision making is the only way to work through this. As a father of two, I can definitively state that I was not really in sound mind during the first 24-48 hours at the hospital. Do the immediate tests if necessary, but don't do anything else with that sample until the parents can make an informed decision.
Re: Pros and Cons
I think states and medical researches should have carte blanch to collect any data, so long as it's NOT attched to personally identifiable information. The good of public health can only be served by having as much data as possible on the human populace. No names, no social security numbers, no addresses, no phone numbers, but everything else? Have at it. Perhaps down the road it will lead to a genomic text for X predisposition or disease and the DNA I shared will come back to help me.
Re: Pros and Cons
I don't think I could go as far as to say carte blanch. That's a pretty big jump for "the good of public health." I'm sure others would agree with you, though.
Re: Pros and Cons
I wrote carte blunch with the exclusion of personally identifiable information. How could such aggregated data possibly hurt anybody?
Re: Pros and Cons
DNA is basically a fingerprint. Perhaps the likelihood is remote, but I don't think there's a big gap between starting with a de-personalized sample and then linking up more identifiable data when more data points enter the system in the future. Once it's out there, it's out there. Given the rate of technology and medical research change over the last several decades, I don't think it is possible to foresee either the positive or negative ramifications of data like this. That uncertainty, which could lead to cures and to various forms of discrimination, is why I'm hesitant.
There is tremendous value in medical research. For me, the public good of having access to that data doesn't automatically trump privacy issues.
There is tremendous value in medical research. For me, the public good of having access to that data doesn't automatically trump privacy issues.
Re: Pros and Cons
That's a sound approach. Or ask for permission before the baby's born. You have to do so many other things in advance, when feasible - register at the hospital, find and enrol with a pediatrician - so discussing heel tests is certainly not unreasonable. I'd imagine there'd be more buy-in if obsetricians discuss this with parents. By the time you actually have the baby, you're well-acquainted with that docotr (and hopefully trust him/her implicitly!).
Re: Pros and Cons
One thing I have heard discussed among big data and analytics professionals is whether there will eventually be a way for patients to voluntarily disregard HIPAA, allowing researchers to use identifiable information to gain better access to the demographic data that adds a lot of insight to their studies. If that ever happens, I would be vehemently against allowing parents to give away their children's identifiable DNA or genomic information voluntarily. That right resides with the individual when they're considered adult. No one else.
Re: Pros and Cons
Deidentificated data is tricky. Under HIPAA's deidentification approach, 18 points are removed (such as name, address, DOB, ZIP, etc.) Under another statistical approach, you need a lot more data and controls, but it's more accurate. Personally, I think a lot of places probably do a really good job. But there's always that one, like the boiler room trader who defies SEC rules in order to grab a quick buck. Why should we presume such operators don't also exist in healthcare?
Re: Pros and Cons
Big data and privacy are two concepts that collide.
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User Rank: Author
8/25/2014 | 2:11:18 PM
You don't need to be a conspiracy theorist to admit there are some ethical and security questions here. And you don't need to be a huge privacy advocate to also admit there are some real benefits to those children found to flourish with very early medical intervention.
Must say though, when I learned more about this process and found out how it was done where my daughter was born, I was upset that I knew nothing about the bigger implications of the heel test. Granted, my daughter is a teen now, genetic testing was more expensive and big data wasn't a catch phrase (although I had been covering tech for many years prior to her birth), but you'd hope institutions were more transparent about this whole area. Let consumers know what's going on. Usually, we're much more approachable and agreeable when we're educated.