Will Texans Own Their DNA?

Will Texans Own Their DNA?

Greg Abbott, candidate for Governor, thinks they should

 

On November 12th, Abbott released his “We the People Plan” for Texas. Clearly he’s heard from Texans who want tough new health data privacy protections.

 

Topping his list are four terrific privacy recommendations for health and genetic data:

  • “Recognize a property right in one’s own DNA.”
  • “Make state agencies, before selling database information, acquire the consent of any individual whose data is to be released.”
  • “Prohibit data resale and anonymous purchasing by third parties.”
  • “Prohibit the use of cross referencing techniques to identify individuals whose data is used as a larger set of information in an online data base.”

 

The Omnibus Privacy Rule operationalized the technology section of the stimulus bill. It also clarified that states can pass data privacy laws that are stronger than HIPAA (which is a very weak floor for data protections).

 

Texans would overwhelmingly support the new state data protection laws Abbott recommends . If elected, hopefully Abbott would also include strong penalties for violations. Contracts don’t enforce themselves. External auditing and proof of trustworthy practices should be required.

 

Is this the beginning of a national trend?  I think so.

 

The more the public learns about today’s health IT systems, the more they will reject health surveillance technologies that steal and sell sensitive personal health data.

Don’t Let EHR Vendors Own Your Data

“In a recent blog posting, John Moore and Rob Tholemeier of Chilmark Research ask the question: ‘Who’s Data is it Anyway?’ Your electronic health records data is not the property of your vendor and there are things you can do about it, they contend.”

To view the full article, please visit: Don’t Let EHR Vendors Own Your Data

Abbott’s Privacy Rights Proposals Draw Attention

“Attorney General Greg Abbott‘s support for more stringent privacy laws is getting some notice, as privacy rights activists say his proposals would lead to more protections for Texans. But concerns tied to the enforcement of the proposed policies are also being raised.”

To view the full article, please visit: Abbott’s Privacy Rights Proposals Draw Attention

 

Myth: The Benefits of Electronic Health Records Outweigh the Privacy Risks

Myth: The Benefits of Electronic Health Records Outweigh the Privacy Risks

Fact: It’s impossible to weigh the ‘benefits’ of EHRs vs. the ‘risks’ when we have no way of knowing what all the ‘risks’ are. Current health IT systems and data exchanges enable unlimited hidden use and sale of personal health data.

There is no map that tracks hidden disclosures of health data to secondary, tertiary, quaternary, etc, etc users. It’s crazy, but we have no ‘chain of custody’ for our most sensitive personal information, health data.

How can we make informed decisions about using EHRs when there is no map to track the 100s-1000s-1,000,000s of places our personal health information, from prescriptions to DNA to diagnoses, ends up?

Take a look at this website: http://www.theDataMap.org

·        Harvard Professor Latanya Sweeney leads this project to map the hidden flows of health data.

·        Patient Privacy Rights is a sponsor.

·        Not only is it impossible for individuals to make an informed decision about the risks and benefits of EHRs, but it’s ALSO impossible for Congress to create sane health reform and healthcare laws, formulate appropriate health and privacy policies that provide ironclad data privacy and security protections when we have no idea where PHI goes, who uses and sells it, or what it’s used for.

·        One example of not knowing where/how our personal health data ends up: Identifiable diabetic patient records are sold online for $14-$25 each. See: http://abcnews.go.com/Health/medical-records-private-abc-news-investigation/story?id=17228986&singlePage=true#.UFKTXVHUF-Y

If you think about privacy-destructive health IT,  it is the exact opposite of what patients expect. And it violates patients’ strong existing rights to health information privacy and control over personal health data:

·        One example: Patients give pharmacies a prescription for only one purpose: to fill their prescription. They don’t expect all 55,000 US pharmacies to sell every prescription, every night. The prescription data mining industry sells our easily identifiable prescription records collects 10s-100s of billions in revenue every year.

·        Another example: Patients expect physicians to keep their records private. They don’t expect physicians or EHRs to sell their sensitive data, treating patient data as another way to make money. But selling patient data is the business model of almost all EHRs, including Practice Fusion, Greenway, Cerner, Athena, GE Centricity, etc, etc. Patients give doctors information for one purpose only: to treat them. They don’t expect it to be used and sold by Business Associates, subcontractors, and subcontractors of the subcontractors for other purposes. Again, in the US patients have had a very long history of rights to health information privacy in law and ethics (the Hippocratic Oath).

 

Fact: the public will only trust health technology if they control their health data and can have real-time lists of those who use their health data. Hidden use of personal health data must stop. Users should ask our consent first. We need control, accountability and transparency to trust health technology.

Abbott’s Privacy Rights Proposals Draw Attention

“Attorney General Greg Abbott‘s support for more stringent privacy laws is getting some notice, as privacy rights activists say his proposals would lead to more protections for Texans. But concerns tied to the enforcement of the proposed policies are also being raised.”

To view the full article, please visit: Abbott’s Privacy Rights Proposals Draw Attention

Don’t Let EHR Vendors Own Your Data

“In a recent blog posting, John Moore and Rob Tholemeier of Chilmark Researchask the question: “Who’s Data is it Anyway?” Your electronic health records data is not the property of your vendor and there are things you can do about it, they contend.”

If you have a subscription to HealthData Management and would like the view the full article, please visit: Don’t Let EHR Vendors Own Your Data

The Reports of the Death of Privacy Were Exaggerated: California Breathes New Life into the Privacy Rights of its Residents

Vast NSA troves of phone and email data and the huge focus on HealthCare.gov’s website provoked intense public concern about hidden uses and sales of personal data…..especially personal health data.

But there is great news from California:  tough new laws to protect data privacy were enacted in September.  See: “The Reports of the Death of Privacy Were Exaggerated: California Breathes New Life into the Privacy Rights of its Residents”, Tuesday, November 19, 2013, by Sharon R. Klein and Odia Kagan

States like CA and TX (HB 300) passed new laws because state residents are demanding stronger data privacy protections, and Congress and federal agencies have failed to act.

Key new data privacy protections in CA:

“Business(es) offering software or hardware to consumers… designed to maintain medical information or to assist in the diagnosis and treatment of individuals” must:

Press your state lawmakers to pass strong new data protection laws like California’s.  People want technology that protects privacy. They won’t trust companies and government that eliminate privacy and use personal data without consent.

Your Posts, Their Ads: Facebook’s Privacy Policy Changes

Check out the latest from Debra Diener, courtesy of Privacy Made Simple.

This is a “heads up” about Facebook’s Friday, November 15th Privacy Policy announcement.  I had previously written about the proposed Privacy Policy changes that Facebook announced back in August. While some of those changes have been deleted, the key change has now been made final — and it’s a change about which Facebook users need to be aware.

What’s the change?  By having a Facebook account, users are agreeing that Facebook can use their personal posts, photos, location and other personal information for advertising. Vindu Goel wrote an excellent article about the Privacy Policy changes and how they fit into Facebook’s overall business plan.  He wrote that the changes are part of a broader effort by Facebook of “…pushing its users to share more data while also making that information easier to find” (www,nytimes.com/2013/11/16/technology/facebook-amends-privacy-policies”; “Facebook Reasserts Posts Can Be Used to Advertise)”.

Facebook users should also read the November 15th blog by Erin Egan, Facebook’s Chief Privacy Officer, Policy (https://www.facebook.com; “Updates to Data Use Policy, Statement of Rights and Responsibilities Take Effect”).  In brief, Ms. Egan said that “…nothing about this update changes advertising policies and practices….”   She wrote that the changes only clarified Facebook’s prior policies.

Ms. Egan’s lengthy blog outlines many areas about which Facebook users need to be aware (e.g., use of tags, advertising, setting changes). Facebook users might not mind having their posted information used in ads but they should know what is being done — and what, if anything, they can do about it.  I also encourage Facebook users to periodically visit the Facebook “Site Governance” and “Privacy” pages to keep current on any future policy changes.

Courtesy of Privacy Made Simple.

Rejecting Billions, SnapChat Expects a Better Offer

To view the full article, please visit: Rejecting Billions, SnapChat Expects a Better Offer

SnapChat made front page of NYTimes this morning valued at BILLIONS by WallStreet! This is huge news: the very first privacy app worth billions! If people/industry value control over pictures IMAGINE how many millions of people would want privacy apps to control health data!