Bradley Jansen (editor)

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Bradley Jansen is the director of the Center for Financial Privacy and Human Rights, part of the Liberty and Privacy Network, a Washington DC-based non-profit founded in 2005 to defend privacy, civil liberties and market economics. He is an adjunct scholar at the Competitive Enterprise Institute. Previously at the Free Congress Foundation, Jansen safeguarded privacy and other Constitutional liberties including testifying before Congress on the USA PATRIOT Act proposal, National ID, and other issues. While working for U.S. Rep. Ron Paul, he initiated and lead opposition to the "Know Your Customer" proposal. Jansen holds a B.A. in International Studies from Miami University (Ohio), learned Spanish at the Pontificia Universidad Javeriana (Colombia), and with advanced studies in economic history at Universidad Católica de Valparaíso (Chile) and law and economics at George Mason University School of Law.

He is a columnist with The Daily Caller, The Huffington Post and Nolan Chart.

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Lack of Respect for Privacy Curbs Records Access, ask Ireland

by Bradley Jansen July 23rd, 2014 11:08 am

I have been busy with some other issues and have not followed this case as quickly as I would like, but I have been shouting from the rooftops that the genealogy community needs to up its game respecting privacy or risk loss of records access.  The sooner this message sinks in, the better for us all.

The Irish genealogy news site brought this issue to our attention.  Kudos go out to Claire Santry for saying what needs to be said:

Just three weeks on from the launch of the General Register Office's civil registration indexes on IrishGenealogy.ie, the entire collection has been taken offline. Seems no one thought to mention to the Data Protection bods that the collection included personal information of living individuals right up to last year [emphasis added]...

To say this is a gigantic cock up is an understatement...

Embarrassing? It's downright pathetic.

My reaction to this news is unprintable.

She refers to two other articles for more information:

http://www.irishtimes.com/news/ireland/irish-news/genealogy-site-left-personal-data-open-to-identity-thieves-says-commissioner-1.1872664

and their followup here:

http://www.irishtimes.com/news/ireland/irish-news/personal-details-removed-from-site-over-identity-theft-concerns-1.1872741


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Facebook Group Privacy

by Bradley Jansen April 22nd, 2014 11:48 am

Probably like many other genealogists (fellow amateurs as well as professionals) who are on Facebook, I'm in several genealogical groups (mostly geographic based on counties in the United States or provinces abroad).

I've been impressed with the privacy-consciousness of many of the groups.  In particular, I'd like to single out for praise the "Southern Maryland Families" Facebook group which has this message pinned by moderator Wanda Simmons as the top comment:

PLEASE READ THIS NOTICE CAREFULLY: To every member - while we strongly encourage everyone to reply to all discussions and share family history/lineage information with others here in this group, we ask that everyone please be aware of the privacy act laws and sensitivity issues when posting family history information. You cannot publically (and that includes here within our group) display a full month/day/year birthdate for anyone born after 1940 or if they are living. We do not want to invade anyone's privacy or break any laws. As with everything else we do in life, here we have a few rules and regulations to abide by and to watch out for when posting. Please, still feel free to continue to share family history in abundance, just as long as everyone is aware of and follows these very few but very necessary rules we will be fine. Thank you in advance for your cooperation and understanding with this matter. If you have any questions in reference to this post, please contact me. Have A Nice Day!

The moderators and, well, traditions and customs of many of the other groups have shown a laudable respect for protecting the privacy of living people.  This consciousness is much more important in the digital age.

So again, thanks and kudos to Wanda (who gives "all the praise and credit to our group members for holding to this thought/golden rule each day as they are posting and sharing their information"), and let's do what we can to make sure this understanding of the importance of privacy becomes more uniformly enforced within our community on Facebook and the rest of the digital world!


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HHS Says Lab Results Empower Consumers

by Bradley Jansen February 6th, 2014 1:15 pm

Time to renew the 23AndMe access to lab tests fight!  Background from previous posts here.

As most readers here are familiar on hand of the government (in this case the Federal Trade Commission Food and Drug Administration) has stopped consumers from getting genetic medical test results.  Now another hand of the government, this time the US Department of Health and Human Services (HHS) clarifies in a final ruling February 3:

"The right to access personal health information is a cornerstone of the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule," HHS Secretary Kathleen Sebelius said in a press release. "Information like lab results can empower patients to track their health progress, make decisions with their health care professionals, and adhere to important treatment plans."

Explains the Medscape story:

Under the HIPAA Privacy Rule, patients or their designees or personal representatives can get a copy of their protected health information, including an electronic copy, with limited exceptions, but may have to put their request in writing and pay for the cost of copying, mailing, or electronic transfer, the release said. In most cases, copies must be given to the patient within 30 days of his or her request.

How on earth can the FTC continue their heavy-handed interference with private contracts now?!


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Privacy at RootsTech

by Bradley Jansen February 2nd, 2014 9:07 pm

As many technologically-oriented genealogists know, the RootsTech conference at Salt Lake City, Utah starts soon.  In fact, this group blog started at RootsTech last year, and we announced it during an "unconferencing session" with Fred Moss of the Federation of Genealogical Societies, Jim Dempsey with the Center for Democracy and Technology and myself.

The syllabi for this year's conference are available here.

Looking at the schedule, one will find many issues related to privacy and the related tech issues such as storing and sharing your information online and in the cloud.

Just a reminder that "genealogyland" has joined privacy and technology advocates to update the Electronic Communications Privacy Act (ECPA) in the Digital Due Process coalition.  For more information, check out http://digitaldueprocess.org.


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Genealogical Access v. 2nd Amd?

by Bradley Jansen January 16th, 2014 4:19 pm

Why must the genealogical community go out of its way to pick fights and create enemies?

The current issue of Virginia restricting records access as an intended consequence of a law to protect the privacy of law abiding Virginians was brought to my attention by my colleague, the Legal Genealogist, Judy Russell in her blog post, "Virginia call to arms."  In it, she explains:

The purpose of S. 1335, now Chapter 659 of the 2013 Acts of Assembly of Virginia, was to protect the privacy of those who have applied for and received permits to carry concealed weapons. The fiscal statement accompanying the bill simply said that it “prohibits the clerk of a circuit court who issued a concealed handgun permit from disclosing any applicant information” and that it was “not expected to have any material fiscal impact on the court system.”

But that the law of unintended consequences chimed in:

As a result of Chapter 659, there’s been a dramatic change at the Library of Virginia, Virginia’s fabulous state archives-and-library in Richmond, where — until this law was passed — you could simply pull a reel of microfilm out of a drawer and immerse yourself in the minutia of 18th, 19th and early 20th century court records.

But because of this law, the court record books and the index rolls to those record books were pulled from the accessible microfilm. And not just a few records. At last count, there were more than 220 rolls of microfilm including court order books, indexes of court order books, indexes to court cases that are affected. At least 135 of those reels contain nothing but records that are more than 100 years old.

So, we know two things to sum up: there is majority support to protect the privacy of concealed carry weapons permit applications and that the lack of any time constraint in the new law forces University of Virginia and state employees to look up information for records access on historical records that used to have open access.

Certainly, reasonable people could come to an understanding to fix this problem.  But no.  The "fix" currently proposed would protect the privacy of living people for only five years.  This arbitrary number seeming pulled out of thin air undermines the logic of the underlying law: "designed to keep criminals from getting information about people who own guns today" as Judy's follow up post explained.

Unless there is an argument can be proven that firearms owners don't keep any weapons for as long as five years in their lives or that they never stay at the same address for that long, the five year "fix" contravenes the rationale of the underlying law and should be rejected in the name of privacy as well as public safety.

As I explained when I testified before the 

Committee on Public Safety and the Judiciary, 
Council of the District of Columbia in 2008 in the wake of the DC v. Heller decision:

The registration process of the regulations create a dossier of citizens. Probably the greatest concern of the Center for Financial Privacy and Human Rights is the Big Brother surveillance concerns of the gun registration.
We know that broadly half of the data abuse problems come from internal abuses: either those who should have legitimate use of that data and abuse it or allow others who should not have such access to get use of our information. Identity fraud (popularly called identity theft) is a serious and growing problem . . .

The worst possible scenario would be for the city to institute a gun registration program that makes public a list of gun owners in the District who would then become targets for gun theft. Under such a scenario, we would then potentially increase the number of guns in the hands of criminals, increase crime and further victimize law-abiding, peaceable people.

The genealogical community, particularly the Virginia Genealogical Society, should demonstrate that they care more about potential gun victims, privacy concerns such as identity fraud and protecting Constitutionally-recognized rights more than they do insisting on five year access to information about living people.

Just how tone deaf is the genealogical community?

Now is the time for leadership: take a stand against gun violence and identity fraud and suggest a friendly amendment to the "fix" with a 100 year time delay which would not affect the majority of the concerned records, or at least a 74 year one to harmonize with privacy expectations set by the U.S. Census.

The goal of records access would advance more by outreach and involvement with broader coalitions of good government, records access, and whistleblowers than senselessly antagonizing the privacy community and needlessly making new enemies among the Second Amendment supporters.

EDIT:  While some in the genealogical community might pooh pooh the idea that making firearm permit applications public might encourage criminals to dust off records in libraries or jeopardize law-abiding firearms owners, they need to pull their head out of the sand.  A quick Google search shows that almost exactly a year ago, the New York Times ran a story "Newspaper Takes Down Map of Gun Permit Holders" spelling out exactly these real concerns.

This was not an isolated incident.  The same thing happened in Tennessee, Indiana, Ohio, Maine, Iowa, North Carolina, Missouri, previously in Virginia, and other places.  Seriously, law abiding gun owners don't like being outed like sexual predators.


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Genealogists Support ECPA Petition for Privacy

by Bradley Jansen December 11th, 2013 6:10 pm

The Federation of Genealogical Societies has a new blog post out joining with their colleagues in a large privacy coalition called Digital Due Process (of which this think tank is a member as well).  The Electronic Communications Privacy Act was passed in 1986 and desperately needs to be updated.  As genealogy has moved from local paper to online digital research with personal information, it's good to see the genealogical community showing needed leadership!

http://www.fgs.org/rpac/2013/12/10/ddp-anniversity-ecpa-reform-day-of-action

It concludes:

"Today we ask you join us by signing this petition to the White House[http://www.digital4th.org/petition.html]. It’s time for the President to join tech companies, startups, advocates, and Members of Congress by supporting this commonsense, long overdue reform to ensure our privacy rights online.”

Please add your voice by signing the petition!


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Genetic Privacy

by Bradley Jansen December 9th, 2013 2:49 pm

 

The Council for Responsible Genetics recognizes the need for consumer genetic privacy and has created the Genetic Privacy Network:

www.geneticprivacynetwork.org

 


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Genealogy Sites Not Good Source For Obama Children Birth Records

by Bradley Jansen December 3rd, 2013 7:19 am

The internet reminds us daily that half of the people are below average.  Today's reminder comes from a ridiculous anti-Obama rant (it's actually from last month, but it didn't come to my attention until today) reposting from an original post here from a "Dr. Eowyn."  The gist of the nonsense is that since the author couldn't find the birth records of President Obama's children on two genealogy sites, then, well, I guess that's supposed to mean something.

I'm guessing that since the focus is on Obama-related birth records that it aims to keep alive the birther distraction.  The premise that there would be something questionable because one can't find birth records of living people on genealogy sites only demonstrates how ill-informed some people are (or just plain stupid they are--or just how stupid they think we are, most likely, in this case).  No, genealogy sites are not good resources for information on living people.

Explains some Ancestry.com help links:

Tips for finding living persons on Ancestry:  "Searching for the living may pose unique challenges, such as laws protecting rights of privacy and highly mobile societies."

 You probably will not find yourself on Ancestry:  "Data provided on ancestry  Please understand that most of the information found on Ancestry is about deceased persons. We do not include information on the living, save only a few databases such as our phone and address listings and the Ancestry World Tree. This is done to protect the privacy of living individuals. We currently have over 2 billion names in our databases online."

Living Information in the Ancestry World Tree:  "Are living individuals included in the Ancestry World Tree?  In an effort to protect the privacy rights of living individuals, Ancestry currently replaces the vital information for all living persons from submitted GEDCOM files with the phrase Living Information Withheld. After the file is cleaned, the person's surname and gender will still remain. However, their birth date, place, and other information will be excluded. Their first name will be replaced with the word Living. Only the submitter of the file will be able to see living individuals in the file or download them. All other users trying to download the file will receive a file with the vital information of living persons excluded."  [n.b. This page also has directions on how to get information on living people removed that may have slipped through a privacy filter.]

Ancestry.com's privacy policy also includes several statements respecting the privacy of living people.  There is also a page explaining further their "privacy philosophy" as well.

What about the other genealogy cited?  Well, same problem for the agitator--that site respects the privacy of living people too.  GenealogyBank.com let's users search their collection of historical documents which include:

  • Military Records
  • Casualty Lists
  • Revolutionary and Civil War Pension Requests
  • Widow's Claims
  • Orphan Petitions
  • Land Grants

It's hardly surprising that the president's daughters wouldn't be listed in military records or widow's claims!  Of course, the site also has historical books published before 1900, but they wouldn't be written about there, and the Social Security Death Index.  While there are problems with the SSDI falsely reporting some living people as dead (the subject of other posts), this would not apply to the First Children.

One of the site's substitutes for birth records includes their impressive newspaper selection.  This search allows one to "Search Birth Records and Announcements in Newspapers 1728-1999."  They advertise, "Find your ancestors' birth records published in newspapers. Read birth announcements, see baby photos and discover clues in birth notices that can help you trace your family tree in our newspaper archives."  Needless to say, not all births get announced in the newspaper nor does GenealogyBank.com have every paper.

GenealogyBank.com's privacy policy includes this note on children's privacy:

Children's Privacy  NewsBank cares about the safety of children and their use of the Internet. Therefore, in accordance with the Children's Online Privacy Protection Act of 1998, we will never knowingly request or solicit personally identifiable information from anyone under the age of 13 without verifiable parental consent. In the event that we receive actual knowledge that we have collected such personal information without the requisite and verifiable parental consent, we will delete that information from our database as quickly as is practicable.

And, unsurprisingly, Ancestry has this post explaining genealogical standards for protecting privacy of living people:

Standards for sharing genealogy

Published 02/11/2002 03:00 AM   |    Updated 07/31/2012 12:46 PM   |    Answer ID 553

I want to share my information with others. What standards should I follow to help others use what I share?

The following is helpful information from the National Genealogical Society's guidelines regarding the SSIO (Standards forSharing [genealogical] Information with Others). This information is found at the following URL:

http://www.ngsgenealogy.org
Standards For Sharing Information With Others
Recommended by the National Genealogical Society
Conscious of the fact that sharing information or data with others (whether through speech, documents, or electronic media) is essential to family history research and that it needs continuing support and encouragement, responsible family historians consistently—

  • Respect the restrictions on sharing information that arise from the rights of another as an author, originator or compiler; as a living private person; or as a party to a mutual agreement
  • Observe meticulously the legal rights of copyright owners, copying or distributing any part of their works only with their permission, or to the limited extent specifically allowed under the law's "fair use" exceptions
  • Identify the sources for all ideas, information and data from others, and the form in which they were received, recognizing that the unattributed use of another's intellectual work is plagiarism
  • Respect the authorship rights of senders of letters, electronic mail and data files, forwarding or disseminating them further only with the sender's permission
  • Inform people who provide information about their families as to the ways it may be used, observing any conditions they impose and respecting any reservations they may express regarding the use of particular items
  • Require some evidence of consent before assuming that living people are agreeable to further sharing of information about themselves
  • Convey personal identifying information about living people—like age, home address, occupation or activities—only in ways that those concerned have expressly agreed to
  • Recognize that legal rights of privacy may limit the extent to which information from publicly available sources may be further used, disseminated or published
  • Communicate no information to others that is known to be false, or without making reasonable efforts to determine its truth, particularly information that may be derogatory
  • Are sensitive to the hurt that revelations of criminal, immoral, bizarre or irresponsible behavior may bring to family members  [bold added to selected text]

© 2000 by National Genealogical Society.
Permission is granted to copy or publish this material, provided
it is reproduced in its entirety, including this notice.

 

In short, no, genealogy sites would not publish birth records of living people.  Using genealogy sites to question, well, I guess, the parentage of living people only illustrates how ignorant and misguided some claims are.


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Genetic Genealogy Saves Lives

by Bradley Jansen December 1st, 2013 11:07 am

The FDA's dispute with 23andMe has started a worthwhile debate.  While I think the Federal Drug Administration over-reached (bureaucrats are prone to mission creep and are always looking to expand their turf), they have a point that we are going to need to address new advances in technology.

Adding to this discussion is a post on Laura's Family Search blog on a genetic genealogy test probably saved her life:

How Genealogy Saved (or Significantly Changed) My Life

...

I wrote earlier how I found another whole branch of my family via DNA testing.  This was so exciting that I decided to test with the other large companies in case other lost cousins had tested with those.  One of those companies, 23AndMe, offered health information in addition to identifying potential cousins...

23AndMe seemed to think that I had a BRCA2 (6174delT) mutation...I quickly panicked and then called my doctor the next morning...

I then had an MRI-guided biopsy...  During the biopsy, the radiologist saw another small area that hadn't been called out on the first radiology report and decided to sample it as well.

Two days later, I was told that I had breast cancer...Had I not been genealogy-obsessed, I never would have taken this test and never would have known that I had a mutated BRCA2 gene--and then I would not have had that MRI...This wouldn't have been caught for years--during which the tumor would have continued to grow--and there could have been a very different ending to this story.

So here's my pitch to everyone--get obsessed with genealogy.  It could save your life.


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FDA's 23andMe Overreach Reactions

by Bradley Jansen November 27th, 2013 9:29 am

As I posted previously, the Federal Drug Agency stepped their boot on the throat of 23andMe which is a popular medical and genealogical genetic testing company.  The general reaction has not been kind to the FDA.  Good!

From the Washington Post, "The FDA should leave 23andMe alone":

The point is a general one: Having more information about your health status is never dangerous by itself. It only becomes dangerous if patients use it to make dangerous medical decisions. But most dangerous medical decisions can't be made unilaterally; they generally require the assistance of licensed medical professionals who will do their own assessment of the situation before performing procedures that could harm patients.

More to the point, patients have a right to make dumb decisions if they want to. We don't ban patients from reading medical textbooks or WebMD, even though doing so undoubtedly leads to some harmful self-diagnoses. In a free society, patients have a right to accurate information about their health, even if medical professionals and regulators fear patients will misuse it. That includes information about our genetic code.

 Berin Szoka of TechFreedom "FDA Just Banned 23andMe's DNA Testing Kits, and Users Are Fighting Back"

23andMe is simply doing what the Internet does best: forcing old dogs to learn new tricks. That's what the fight between Uber and taxicab commissions is about. Same for AirBnB and hotel regulators. The only profession slower to change how they do things than doctors is bureaucrats. So the FDA's reaction is understandable -- but misguided.

23andMe issued this statement, "An Update Regarding The FDA’s Letter to 23andMe"

This is new territory for both for 23andMe and the FDA. This makes the regulatory process with the FDA important because the work we are doing with the agency will help lay the groundwork for what other companies in this new industry do in the future. It will also provide important reassurance to the public that the process and science behind the service meet the rigorous standards required by those entrusted with the public’s safety.

Nick Gillespie at the DailyBeast, "No DNA Testing For You, Thanks to the FDA"

The FDA is seriously claiming that you might learn you have a possibility of developing breast cancer and then insist on having the potentially cancerous body part lopped off. And that you'll be able to find a doctor or hospital or taxidermist who will do any or all of that without doing further tests and followups. They don’t provide a single instance of this happening nor do they specify any possible medical world in which this might happen, but that’s enough to shut down 23andMe for the foreseeable future.

Razib Khan at Slate, "The FDA's Battle With 23andMe Won't Mean Anything in the Long Run"

You can frame this as an “old economy” vs. “new economy” clash. Medical testing firms are well-established sectors of the American economy, and they expect relatively tight regulatory oversight because of the nature of what they are selling. Tech companies, in contrast, are governed with a looser hand, and they sink or swim without much oversight in their first years. Based out of Silicon Valley (not to mention co-founded by Anne Wojcicki, the reportedly estranged wife of Google’s Sergey Brin), 23andMe has the blood of a tech company coursing through its veins, but it’s entering a domain which has traditionally been governed by numerous regulations.

Ronald Bailey on the Reason.com blog, "FDA Shuts Down 23andMe: Outrageously Banning Consumer Access to Personal Genome Information"

What the test results would actually lead patients to do is to get another test and to talk with their physicians. The FDA also cites the genotype results that indicate the sensitivity of patients to the blood-thinning medication warfarin. Again, such results would be used by patients to talk with their doctors about their treatment regimens should the time come that they need to take the drug. In fact, in 2010 the FDA actually updated its rules to recommend genetic testing to set the proper warfarin dosages for patients.

It is notable that the FDA cites not one example of a patient being harmed through the use of 23andMe's genotype screening test.

Bloomberg interviewed 23andMe co-founded Anne Wojcicki here.

 


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