Facebook Eases Privacy Rules for Teenagers

Vindu Goel ties all the critical factors together in Facebook’s ongoing decisions that eliminate teens’ privacy on Facebook: the history of social media and children, teen psychology and bullying, the EU’s response, and how exposing teens online is driven by Zuckerberg’s quest for ever greater profits.

To view the full article, please visit: Facebook Eases Privacy Rules for Teenagers

Everyone expects information they share to be used only once, for one purpose.

This expectation is not a surprise. This ethical principle is called  ‘single use’ of data.

Humans expect to set and regulate personal boundaries in relationships with others.  We only trust people and institutions that don’t share sensitive personal information without asking us first.

People don’t trust governments or corporations that violate their expectations and rights to privacy, ie, rights to control the use of personal data.

When the US public realizes their rights to health information privacy are violated by hidden government  and corporate use and sale of their most intimate, sensitive information: health data, from prescriptions to diagnoses to DNA—the fallout will be far more devastating than the NSA revelations.

After all, Americans expect some level of government surveillance to protect us from terrorism, but the hidden collection and sale of health data by industry and government is very different: it completely shatters trust in the patient-physician relationship. The lack of trust in electronic health systems already causes 40-50 million people to delay or avoid treatment for serious illnesses, or to hide health information. Current technology causes bad health outcomes.

The Internet and US health technology systems are currently designed to violate human and civil rights to privacy.  The Internet and technology must be rebuilt to restore trust and restore our rights to control personal information.

Deb

The FBI’s New Wiretapping Plan Is Great News for Criminals

To view the full article, please visit: The FBI’s New Wiretapping Plan Is Great News for Criminals

US technology is designed for ‘exceptions’ and ‘outliers’, i.e., ‘worst-case’ scenarios like terrorists and unconscious patients.

Bruce Schneier concludes  his May 29th  essay:

“Finally there’s a general principle at work that’s worth explicitly stating. All tools can be used by the good guys and the bad guys. Cars have enormous societal value, even though bank robbers can use them as getaway cars. Cash is no different. Both good guys and bad guys send e-mails, use Skype, and eat at all-night restaurants. But because society consists overwhelmingly of good guys, the good uses of these dual-use technologies greatly outweigh the bad uses. Strong Internet security makes us all safer, even though it helps the bad guys as well. And it makes no sense to harm all of us in an attempt to harm a small subset of us.”

Fear-driven technology harms Democracy and health:

  • Example #1: FBI

Bruce Schneier’s essay (below) tells how US-created security flaws help the wrong people (criminals and terrorists) and harm the rest of us (law-abiding citizens).

  • Giving the government access (via back doors, brute force decryption, etc) to everyone’s data to find terrorists is the ‘worst-case’ scenario used to justify destroying strong data security protections.
  • But law-abiding people, businesses, and government really NEED strong data security protections to function everyday online.
  • Criminals and terrorists can exploit the security flaws created to catch them to steal information and harm governments, individuals, and corporations; but ordinary citizens and businesses can’t build or afford security technology to protect their own data.
  • WORST CONSEQUENCES: people will not trust technology and governments, and cyber-wars can destroy people, governments, and corporations.

 

  • Example #2: US health technology systems

The US eliminated data privacy in health technology systems, helping the wrong people (government and corporations) and harming patients.

  • Government and corporations control the use of the nation’s health data. Medical emergencies are the ‘worst-case’ scenario used to justify this technology: if you are unconscious in an emergency room (a one-in-a-million), you can’t give consent to share your data.
  • But the 299,999, 700 million US patients who are awake expect to control use of personal health data in order to trust doctors and technology.
  • Government and industry control use of the nation’s data for various purposes without the knowledge of the public, there is no ‘chain of custody’ for health data and no data map to track uses. Some hidden uses may be beneficial and some may harm patients.  Patients can’t buy or use privacy technology to protect health data.
  • WORST CONSEQUENCES: 40-50 million people/year avoid or delay treatment, or hide information to protect the privacy of health information, risking their lives and health.  Technology causes tens of millions of people who need treatment to suffer bad health outcomes.

 

In a Democracy, judges should approve spying on suspected criminals or terrorists. In a Democracy patients should be asked for consent to use personal health data. Advance directives or break-the-glass technology can permit access to health data when patients are unconscious.

 

In a Democracy, shouldn’t technology support ‘best-case’ scenarios , i.e., citizens’ freedoms and human and civil rights to privacy and health?

FTC Files Complaint Against LabMD for Failing to Protect Consumers’ Privacy

The public would be surprised how little thought or money healthcare businesses put into data security.  LabMD is probably just one of thousands of healthcare businesses that don’t encrypt patient data and whose employees who use file-sharing apps to download music, etc, exposing patient records online.

We need new laws that require businesses that hold health data to be audited to prove they protect it.

Shouldn’t businesses have to prove they use tough data security protections before they are allowed to handle sensitive health information?

To view the full article, please visit: http://www.ftc.gov/opa/2013/08/labmd.shtm

Between Paranoia and Naivete

This op-ed was written by the political editor of the German paper ‘Die Zeit’. He summarizes the historical/cultural perspectives of Germany and the US regarding data protection and rights to control personal information in electronic systems.

He recommends both nation’s approaches should be on the table for discussion to decide “best practices” for data protection.

But he makes some key assertions I disagree with.

He states:

1) A future dictatorship’s use of Facebook would be “the least of your problems”.

  • But actually Facebook spying is very valuable to dictatorships because it reveals contacts and thoughts.

2) Citizens of “liberal societies” are not “experiencing a change in values” and “no longer feel uncomfortable sharing personal even private information”.

  • There is no change in values. Research shows people care just as much as they always have about privacy: ie control over what personal information they share with whom.  People care most about controlling who sees sensitive personal health data—but in the US we have no control.
  • The problem is that privacy/personal control over pii was not built into electronic systems.

3) Re: the Internet as an “emergent system” which “functions so well because it works equally for everybody” and “might cease to offer the greatest benefit for the greatest number”.

  • The Internet has already brought an “advantage to a minority–the rulers”.  He fails to recognize that the Internet is controlled and who controls it now.
  • Lawrence Lessig’s classic book “Code” explains that software and hardware, ie ‘code’ regulates the Internet and determines who controls it.  We must legislate/regulate technology in order to build a cyberspace that supports fundamental democratic rights and values.
  • The NSA/Verizon revelations are proof that a minority in fact control/rule the Internet to the detriment of all; and to the detriment of freedom and our human and civil rights to be “let alone”.

To view the full article, please visit: http://www.nytimes.com/2013/08/29/opinion/between-paranoia-and-naivete.html?_r=0#!

Privacy Advocates Set Their Sights on the Wrong G-Men

In the wake of NSA revelations, key privacy advocates make the point that private corporations and the government are working to ensure total surveillance of all digital information about all 300 million Americans and lock in billions in corporate revenue from the sale of personal data and detailed digital profiles of everyone in the US.

Corporate and government collection, use, and sale of the nation’s personal data is opaque.  The author of the story below trashes several  privacy advocates and misrepresents their key points about the hidden ‘government-industrial complex’.  And he claims that “Individuals can choose not to use a particular social network, search engine or website.”  But individuals have no meaningful choices online. See the documentary: “Terms and Conditions May Apply”.

The lack of trust online and in all holders of personal data is why President Obama proposed the Consumer Privacy Bill of Rights (CPBOR). Unfortunately the proposed data privacy protections in the CPBOR do not apply to the most sensitive data of all, health data.

Meanwhile,  the ‘government-industrial complex’ is destroying Americans’ most fundamental rights to privacy. The highest right of civilized man is the right to be ‘let alone’—which happens to be the foundation of Democracy.  Yet all we read about are the wonders of ‘big data’ and the need to collect and use personal data without meaningful informed consent. We can certainly use big data for innovation and benefits—but the public wants to be asked permission for all uses of data, especially for ‘research’ uses. Big data analytics is research.

  • See Westin’s research that shows only 1% of the public approves use of health data for research without consent. See more of his findings here.

Today US citizens have no control over their most sensitive personal information: health data from DNA to prescriptions records to diagnoses—-because privacy-destructive technologies and system architectures prevent us from exercising our rights to give meaningful informed consent before health data is collected, used, disclosed, or sold.

To view the full article, please visit: Privacy Advocates Set Their Sights on the Wrong G-Men

People Are Changing Their Internet Habits Now That They Know The NSA Is Watching

NSA leaks causing public to mistrust the entire  internet, not just cell phone providers. Quotes:

  • consumer concern about online privacy actually jumped from 48% to 57% between June and July
  • The %  of consumers who adjusted their browser settings and opted out of mobile tracking — jumped 12% and 7% respectively between the first quarter report and July.
  • > 60% of Internet users also reported they do not feel they have control over their personal information online, and 48% said they didn’t know how that information was being used

The lack of personal control over data online will also affect cloud service providers:

  • Cloud-computing industry experts have already estimated that because of the NSA’s surveillance of cloud providers–along with the government’s civil-liberties-trolling methods to get them to comply–more companies will move overseas.
  • ITIF has estimated that this will result in a loss of up to $35 billion for U.S. cloud providers over the next three years, while Forrester analyst James Staten puts the figure at $180 billion.

How will the public react when they find that US health data holders—-such as physicians, hospitals, labs, pharmacies, health data exchanges, insurers, mobile apps, etc, etc— use and sell sensitive personal health data?

To view the full article, please visit:

http://www.fastcoexist.com/3015860/people-are-changing-their-internet-habits-now-that-they-know-the-nsa-is-watching

We want to hear from YOU! Tell us why you think health privacy is important.

Protecting health privacy isn’t just important for your own health and well-being, but what we do now affects future generations too. PPR cares deeply about protecting everyone’s privacy so that people are measured by who they are and what they are capable of, not their medical history.

Currently, there are no limits to the types of organizations that can gain access to sensitive information about you—employers, advertisers, insurers, you name it. It’s so important that we act now to preserve our right to privacy and regain control over our personal information. We believe it should always be up to you to decide what happens to your sensitive information—you should be able to know and control who sees it, where it goes, and why.

People say that privacy is a thing of the past in the Digital Age, but we disagree. In fact, we think people are starting to realize just how important privacy is and that it’s a right worth fighting for. That’s why we want to hear from you. Send us a video telling us why you think health privacy matters and join us in our efforts to protect it.*

Watch the video below to hear Dr. Peel talk about why health privacy is important to her (or click here to view it on YouTube).


*Please note that by sending a video, you are giving PPR permission to display the video on its website or social media pages. However, the video remains the sole property of the copyright holder. Any requests to remove or delete videos will be immediately honored.

A Family Consents to a Medical Gift, 62 Years Later

Should researchers control the use of everyone’s genomes?

It’s time for a national debate about when and how our genetic information should be used.  The healthcare industry and government are planning that our genomes will soon be part of our electronic health records, so that sensitive data can be used without patient consent. The cost of sequencing a genome will soon drop below $1,000.

But the debate about who should control the use of this unique, personal information must be informed by knowing/tracking the hidden flows of genetic data.

The next phase of theDataMap should track the use, sale, and disclosure of genetic information: from hospitals, labs, and genomic sequencing companies to private biobanks, etc, etc.

We cannot weigh risks vs. benefits of open access to genetic data when the risks are unknown.