Who Owns The Data Collected About You From Devices Inside Your Body?
from the this-time-it's-really-personal dept
People have started to wake up to the fact that companies like Google and Facebook hold huge quantities of data about their users. That raises questions about who owns what there, and to what extent users should be allowed access. Now Hugo Campos is asking the same question about a different kind of personal data – that being collected by a cardiac defibrillator implanted in his chest:
"I have this complex little computer implanted in my body, but I have no access to it," says Campos. "The best that patients can do is get a printout of the report given to the doctor, and that's designed for doctors, not patients. Patients are left in the dark."
As the open data movement has shown, the great thing about releasing raw datasets is that it enables people to come up with new and unexpected uses for them. It seems likely that providing access to the data stream from implanted devices would similarly allow all kinds of innovation in the field of digital personalized medicine, which is currently developing rapidly.
That's likely to become more of an issue as the computing power of implanted devices increases, the data becomes richer, and as people start to monitor and even control aspects of their health through software running on smartphones, say. Naturally, they -- and the coders writing apps -- will want full access to the data pouring out of any equipment connected to them or inside them.
As Campos asks:
"Who owns the data collected in my body?" he says. "Should it benefit the company, so they can use it for post-market surveillance? Or me, so that I can make better decisions about my health?"
It's the same kind of question that people are increasingly asking about Google and Facebook, but this time it might literally be a matter of life or death.
Follow me @glynmoody on Twitter or identi.ca, and on Google+
Thank you for reading this Techdirt post. With so many things competing for everyone’s attention these days, we really appreciate you giving us your time. We work hard every day to put quality content out there for our community.
Techdirt is one of the few remaining truly independent media outlets. We do not have a giant corporation behind us, and we rely heavily on our community to support us, in an age when advertisers are increasingly uninterested in sponsoring small, independent sites — especially a site like ours that is unwilling to pull punches in its reporting and analysis.
While other websites have resorted to paywalls, registration requirements, and increasingly annoying/intrusive advertising, we have always kept Techdirt open and available to anyone. But in order to continue doing so, we need your support. We offer a variety of ways for our readers to support us, from direct donations to special subscriptions and cool merchandise — and every little bit helps. Thank you.
–The Techdirt Team
Reader Comments
Subscribe: RSS
View by: Time | Thread
[ link to this | view in thread ]
Re: Hood key
[ link to this | view in thread ]
I know there are laws in the United States that give you permission to view your medical records. I'm not sure about elsewhere.
[ link to this | view in thread ]
Thorny
Two good perspectives for some court to decide in 10 years.
[ link to this | view in thread ]
Re: Re: Hood key
[ link to this | view in thread ]
The programming, done by a company technician, uses a PDA. I asked if they were going to be upgrading to iPhones or other smartphones in the future, but they're not connected to an actual phone device because of security issues. As to who "owns" the data...I'm not sure an argument needs to be made. It's not a diagnosis; it just shows the amount of energy applied to electrodes. The implant can't be activated or deactivated without a strong magnet or the programmer.
I can definitely see where life-dependent devices would be a concern, but probably more of a security/HIPPA issue.
[ link to this | view in thread ]
Re:
[ link to this | view in thread ]
Re:
Where the car example does mirror Campos' is that the codes and diagnostics are designed for trained technicians (doctors in his case) and can still be pretty cryptic to decipher.
I feel it would be great to have data like this freely available. As long as it is not being used for marketting, i think the person who owns it should have free use. As long as it doesn't contain personal identifiers, it could be used to build apps to monitor your health in real time, and the data it collects over time could be used by researchers to study and make advancements in their field.
[ link to this | view in thread ]
Re: Thorny
Makes sense to me.
[ link to this | view in thread ]
IANAL, but..
The question over ownership is more important in that the person whose body it was wants to see this data, not just the report results. I am not sure that this is covered by law, except the provisions mentioned in A Guy's post that the patient is entitled access to their medical records.
It should be interesting if this becomes a test case...
[ link to this | view in thread ]
[ link to this | view in thread ]
I really hadn't thought about it much as I get the printout of the biannual checkup on it and a the same copy of the past 6 months of data my GP gets. In fact, I often end up giving it to her at my next appointment. I've also learned to read it and understand it. It does come in handy.
As far as it goes, though, every Province in Canada mandates the I must be able to see my records, the amount of time they can be retained and that they must be given to me on request.
I take the position that I own my body and any flaws, viri, and other things wandering around in or on me. I have no problem at all with data being used from stuff but heaven help you if you try to patent something you found in me without getting my permission first. That's largely an ethical stance on my part as I have zero use for pharmaceutical patents as, in my mind, they hinder innovation and discovery rather than promote either. And it's going to take a lot more than mere money to budge me off that. Dodges like changing a pill colour and applying that to the patent you hold to keep it from generic makers when the colour change has no value except to change the colour isn't my idea of research and development no matter what big pharma says.
So, examine me, use me and my tissues, fluids or whatever all you want for research and teaching purposes but once you want to use what you found in me in the formulation of any medication remember it's mine, not yours. I expect to be fully informed and to consent before you get there and even think about applying for something like a patent. Got it? :-)
Thanks.
Yours truly
John
and do have a NICE day. ;-)
[ link to this | view in thread ]
ownership of private data colected by inplants in the body.
Hospitals and Doctors and Pharmacy are keeping files in PC as databases, or in case hospitals networks. Increasingly on regional databases, if not national databases, many of which are hosted by in my case an international Database (Can't say offshore as literal term yet) Not your every breath, but your medical history is in doctors files/databases, hospital databases’ increasingly networked and/or outsourced to special corporations who provide this specialty service. In the name of ; “providing better health care.” Insurance companies have pretty extensive records on anyone having claims, applying for certain insurance plans etc. accessible to all insurance companies And...???
Though presently don't think possible or have any purpose, who owns, medical implant logs is a mute discussion. It's available anyone who has knowledge, connections, or resources to find or access them rightfully or not.
It was once reported on major network, reporters in the USA found online sites that provided complete and very detailed information on many details of their lives including complete private medical records.
Unless privacy laws are: Completely rewritten for the 21st century. The law is enforceable internationally. That it is restricted to individual himself that and can be seen read interpreted by attending physicians treating him for that purpose alone.
Computers and networking has ended privacy in almost every way, and details are ever increasing. Soon not only God, Santa Claus, will know all; Big Brother, Big business will too
We all enjoy latest technology, but remember data is food for computers, they collect, process interpret store forever and report to whoever has access.
Why worry about implant data, unless you’re in divorce court and every Wednesday, your heart rate skyrocketed when you were supposed to be at the library.
PS., your cell phone will probably give more data.
[ link to this | view in thread ]
[ link to this | view in thread ]