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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
8/25/2014 | 2:11:18 PM
Pros and Cons
One side of me wants infants to get as much DNA testing as possible, recognizing early treatment can vastly improve a child's life in the case of many conditions. Yet critics raise valid points: What if tests show your child is at risk for a condition that will affect them when they are an adult -- Does the parent or state have the right to know? Who tells the child and when? Or should the chlld have the option not to know, in the same way many adults choose not to undergo genetic testing? What happens to the DNA? What safeguards are in place to prevent its use by police; no one wants to believe their child will become a criminal, but if that happens could law enforcement already be able to access their DNA? And what processes do states use to de-identify data? Are we secure that this database can't be hacked?

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.
jagibbons
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jagibbons,
User Rank: Ninja
8/25/2014 | 2:19:38 PM
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.
D. Henschen
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D. Henschen,
User Rank: Author
8/25/2014 | 3:21:36 PM
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.
jagibbons
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jagibbons,
User Rank: Ninja
8/25/2014 | 3:28:11 PM
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.
D. Henschen
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D. Henschen,
User Rank: Author
8/25/2014 | 3:41:45 PM
Re: Pros and Cons
I wrote carte blunch with the exclusion of personally identifiable information. How could such aggregated data possibly hurt anybody?
jagibbons
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jagibbons,
User Rank: Ninja
8/25/2014 | 3:50:13 PM
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.
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!).
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
8/26/2014 | 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.
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.
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. 

 
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: Moderator
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

 
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.


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