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When Big Data & Infants' Privacy Collide
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Alison_Diana
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Alison_Diana,
User Rank: Author
9/8/2014 | 10:36:01 AM
Re: Weighing the risks
I think what we're seeing is a lack of trust, Peter, brought on in part due to very complex legalese and lack of transparency in what data is used and how it's used, at times. When clearly asked, most people are open to de-identified use of their data for health reasons. I think it's the lack of insight into the technologies and processes that causes concern many times.
Alison_Diana
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Alison_Diana,
User Rank: Author
9/8/2014 | 10:30:13 AM
Re: Some Consumers Choose to Ignore HIPAA Intentionally
There is actually a movement that supports empowering patients to release organizations from HIPAA, in part because of that reason, @jdb8432. I can only imagine, thankfully, the horrors some families go through if a loved one has a serious condition -- especially a rare condition -- and seeks an experimental or costly treatment. Often, they'll do that by sharing their story via social media, traditional media, or any means possible to get support or seek out others in similar positions. It really goes back to "who owns this data" and, in this case, I wholeheartedly believe it is the patient -- or guardian -- who owns it and is using their ownership in the only way they possibly can. Sometimes privacy is over-rated. Sometimes it's not.
pfretty
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pfretty,
User Rank: Ninja
9/8/2014 | 9:35:37 AM
Weighing the risks
In no way am I saying the risks should be ignored, but we need to remember to focus on how meaningful the potential outcome could be in situations like this.  Obviously privacy needs to be the core of all data decisions. Just like we weigh potential, we need to be weighing risk. Why can't data be stripped of its identifying characteristics? Data cleaning, data quality, etc. are all skills we need to better develop as we enter into these areas of opportunty. Unfortunately, most organizations are still behind the eight ball in these areas according to the results of a recent SAS survey.

Peter Fretty

 
jdb8432
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jdb8432,
User Rank: Apprentice
8/27/2014 | 2:57:40 PM
Some Consumers Choose to Ignore HIPAA Intentionally
While I work in the information privacy arena including HIPAA, the law has many positives to protect personal privacy but considerable difficulties in its practical implementation. Many individuals in support groups in this connected, networked world have chosen to disclose health status and other PI (personal information) for themselves or family members. That may make sense in a certain context if someone is disparate for a cure for themselves or family where they reach out for solutions.  In that scenario they may or may not be objectives about evaluating the efficacy of the cure. Health professionals need to be supportive to their patients and their familes that go this route. 

 
jagibbons
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jagibbons,
User Rank: Ninja
8/26/2014 | 10:09:10 AM
Re: Pros and Cons
Privacy and big data definitely collide, but we have to find a way to make them coexist in a reasonable way that allows the strong privacy concerns to be met while also allowing big data research to do what it does best using a wide variety of data sources.
Alison_Diana
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Alison_Diana,
User Rank: Author
8/26/2014 | 9:13:59 AM
Re: Pros and Cons
On Twitter, @InternetEthics cited a story that appeared in MIT Technology Review on June 13, 2014: "For One Baby, Life Begins With a Genome Revealed." Father Razib Khan, a grad student and professional blogger on genetics, roughly mapped out his son's genomes before the infant's birth, after getting his hands on the unborn baby's placenta during the second trimester. Khan did it from curiousity, not from any real medical reason (that is, there were no great risks for serious medical conditions facing the baby, apparently -- unlike the only other instance MIT Tech Review found).

Of course, the ethical dilemma is apparent: While parents are responsible for everything to do with their children, once they become adult offspring take over those rights. Unlocking one's genes is about as personal as it comes -- and the potential harm is pretty obvious. Now genetic testing is getting cheaper and cheaper, more people will no doubt conduct these tests on their own children. One day, we will probably see some of these parents in court, although that's not necessarily the right place for this either.
securityaffairs
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securityaffairs,
User Rank: Strategist
8/25/2014 | 6:24:12 PM
Re: Pros and Cons
Big data and privacy are two concepts that collide.
Alison_Diana
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Alison_Diana,
User Rank: Author
8/25/2014 | 4:45:00 PM
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?
Alison_Diana
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Alison_Diana,
User Rank: Author
8/25/2014 | 4:42:15 PM
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.
Alison_Diana
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Alison_Diana,
User Rank: Author
8/25/2014 | 4:38:58 PM
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!).
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