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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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Death and Privacy Part III

by Bob Gellman February 5th, 2014 12:46 pm

Death and Privacy:  Part III

By Bob Gellman

In 2013, I posted two short articles discussing whether and how privacy rights continue after the death of a data subject. The focus was on US law. I thought that it would be worthwhile to offer some additional information and resources to anyone who has an interest in the topic.

I attended the 2014 Computers, Privacy & Data Protection Conference in Brussels, Belgium, in January 2014, where there was a panel on Post-Mortem Privacy: Exploring Deceased’s Privacy in a Digital World. The Centre for Creativity, Regulation, Enterprise & Technology (CREATe) organized the panel.

Some post-mortem privacy issues, such as what happens to a Facebook page when the owner dies, have been the subject of attention and litigation in the US, but explorations of the general topic in Europe have gone further. Whether dead individuals have rights under the EU Data Protection Directive is not as clear as it might be, and the law in EU Member States varies somewhat. The materials below explore this and other related topics.

First, here are the particulars about the panel:

Chair Michael Birnhack, Tel Aviv University (IL)

Moderator Irina Baraliuc, Vrije Universiteit Brussel (BE)

Panel:  Damien McCallig, Galway University (IE); Elaine Kasket, British Psychological Society (UK); Jan Bikker, University of Dundee (UK); Wendy Moncur, University of Dundee (UK); Edina Harbinja, University of Strathclyde (UK).

 This panel explores the issues surrounding post mortem privacy (PMP): privacy of the deceased in the digital realm. This concept has only recently become a subject of concern in various disciplines, including law, sociology, psychology, computer sciences, anthropology, and forensics. The panel aims to tackle and explain how the competing privacy interests of the deceased, bereaved family, heirs and society should be dealt with following death. It will assess and question the value and importance of the various aspects of privacy in digital remains from personal interest and public interest perspectives. Panelists, drawn from a diverse range of disciplines and interests, will explore the challenges posed to the values and aspects of privacy by our interactions with digital technology and post-death phenomena, specifically digital legacy, inheritance, identity, property, mourning and the repurposing or further uses of digital remains.

This interdisciplinary panel envisages tackling the following PMP-related challenges:

● The bequest, inheritance and repurposing of personal data (such as emails, photos and social network site interactions) in the context of the death of technology users;

● Technologically-mediated mourning and memorialisation and posthumously maintained bonds with the dead;

● Comparative legal issues related to the phenomenon of PMP (personality, data protection, copyright);

● PMP themes relating to the interests of victims experienced in global disasters, whether survivors, the deceased or next-of-kin.

 Second, I looked at some of the materials that the panel members made available, and here are a few links that may be of interest. This is not a comprehensive list of materials, but it will give interested parties a start.

http://script-ed.org/?page_id=809

An issue of Scripted (2013) has several articles about post-mortem privacy by people from the CPDP panel. I won’t list the details here. Click on the link above for abstract and copies.

 http://blog.oup.com/2013/10/dealing-with-digital-death/

Dealing with digital death Posted on Monday, October 14th, 2013 at 4:30 am By Damien McCallig

Through the use of email, social media, and other online accounts, our lives and social interactions are increasingly mediated by digital service providers. As the volume of these interactions increases and displaces traditional forms of communication and commerce the question of what happens to those accounts, following the death of the user, takes on greater significance.

Should the relatives or heirs of a deceased Facebook user have the ‘right’ to access, take control of, or even delete the account? Some of you reading this will recoil in dread at such a thought, quickly remembering all of those digital indiscretions and private messages you would prefer to assign to oblivion but never got around to deleting. Other readers may remember a friend, no longer alive today, and will possibly turn to social media later to seek out a picture and recall a shared memory.

****

http://www.research.ie/intro_slide/law-digital-remains

The Law of Digital Remains. Reconciling the dignity and interests of the deceased with those of the living. Damien McCallig, School of Law, National University of Ireland Galway.

Dealing with the aftermath of someone’s death is always a difficult and sensitive issue. In recognition of this, society has developed various rites, rituals and norms to aid the family and loved ones to deal with the physical remains and redistribute the possessions of the deceased. This involves balancing an innate desire to respect the dignity of the deceased with the needs and interests of the surviving family and wider community.

In the pre-digital age laws adequately reflected these rites and norms. For example, personal mementos, photographs, letters, scrapbooks and meaningful tokens that hold sentimental value pass by default along with the physical property they are bound up in. Succession law reflects these norms, with personal property passing by will or the rules of intestacy. The unauthorised interference by unconnected third parties with a deceased’s personal items was generally precluded as they were bound up in property that would remain within the home or in the possession of friends or family. The digital universe has changed this.

****

 http://www.itworld.com/internet/301418/online-life-after-death-faces-legal-uncertainty

Online life after death faces legal uncertainty. Different jurisdictions set different rules for what should happen to online personal data after death

By Loek Essers, IDG News Service 

October 08, 2012, 10:24 AM — When people die in the real world, their online alter egos may live on, creating an unusual situation for those who only knew them through their online presence. The law is only beginning to address this limbo state, and fragmented privacy legislation provides no conclusive answer to the question of who should be allowed to access or delete someone's social networking profile or email correspondence after they die, a panel discussion at the Amsterdam Privacy Conference concluded.

When a Facebook user dies and Facebook is informed of the death, the company "memorializes" the profile, hiding features such as status updates, and allowing only confirmed friends to view the timeline and post on the profile. Maintaining access to such a profile helps in the mourning process, said psychologist Elaine Kasket, who presented a paper on life after death on Facebook at the conference on Monday. "Visible conversation with a person who died and about person who died is important in the grief process," she said.

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http://academic.research.microsoft.com/Publication/56913300/from-death-to-final-disposition-roles-of-technology-in-the-post-mortem-interval

From death to final disposition: roles of technology in the post-mortem interval 

By Wendy Moncur, Jan Bikker, Elaine Kasket, and John Troyer

Abstract:  In this paper, we describe collaborative processes and stakeholders involved in the period from when a person dies until they are laid to rest: the funeral, final disposition of the body, and (in some circumstances) victim identification. The rich mixture of technologies currently deployed during this brief period are categorized and critically analyzed. We then reflect on the implications of our findings, both for the design of technology that takes the end of life into account, and for the wider HCI community.

 https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2222163

 'What Happens to My Facebook Profile When I Die?’: Legal Issues Around Transmission of Digital Assets on Death (February 21, 3013) Lilian Edwards, University of Strathclyde Law School, and Edina Harbinja, University of Strathclyde Law School

 Abstract:  This chapter aims to explore some of the major legal issues pertaining to transmission of digital assets on death. “Digital assets” within this chapter are defined widely and not exclusively to include a huge range of intangible information goods associated with the online or digital world: including social network profiles e.g. on Facebook, Twitter, Google or Linked In; emails, tweets, databases etc; in-game virtual assets (e.g., as bought, found or built in worlds such as Second Life, World of Warcraft, Lineage, etc); digitised text, image, music or sound, such as video, film and e-book files; passwords to various accounts associated with provisions of digital goods and services, either as buyer, user or trader (e.g. to eBay, Amazon, Facebook, YouTube etc); domain names; 2D or 3D personality-related images or icons such as user icons on LiveJournal or avatars in Second Life; and not excluding the myriad types of digital assets emergent as commodities capable of being assigned worth (e.g. “zero day exploits” or bugs in software which antagonists can exploit ).

The chapter explores (a) how far the new digital assets fall into existing paradigms of property (b) the interactions between property, succession, privacy and contract in this domain, especially in the context of assets generated on intermediary sites such as social networks (c) whether we need a notion of "post mortem privacy" and (d) briefly , some solutions to some of the issues thrown up by previous sections, including emerging legislation , and the new breed of "life after death" technology assistants such as Legacy Locker.

 *****


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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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Practical Practices in Pennsylvania

by Kenneth H. Ryesky February 1st, 2014 10:49 pm

There are two interrelated historical patterns that occur with great frequency:

A. Individuals of power and influence ignore and/or dismiss the significance of an event or development; and, the other side of the coin,

B. There are individuals who engross themselves into any given trend or paradigm shift long before the general acceptance or implementation of such trend or paradigm.

Shortly after the 1993 bomb incident in the World Trade Center parking garage, my brother-in-law, who is very active and high-profile in the broadcast industry, advised broadcasters who had antennae on the WTC Towers to implement back-up antennae at other locations, just in case the WTC antennae would suddenly be removed from service.  Eight years later, my then 12-year-old son, who made a daily 1-hour commute from Long Island to his school in Queens via the Long Island Railroad, had one of the relatively few operational cell phones in the September 11, 2001 chaos. Those cell phone providers who depended solely upon their WTC Tower antennae were caught short-handed, and my brother-in-law was quite unhappily vindicated (as were my wife and I, who had been criticized and castigated for giving a twelve-year-old kid a cell phone).

And, let us not forget what data digitization did to the photographic film manufacturers, and the manufacturers and purveyors of the cameras that used the film, and the processors of the film.

So it goes with privacy and the genealogical community. Those genealogists who failed to recognize the broader privacy issues are now being abruptly sucked into the great privacy debate. And the privacy conversation, genealogy and otherwise, is now spotlighting many areas and issues which heretofore had been seemingly unconnected to our main focuses of concern. One of these is privacy and the taxation process. [It is parenthetically noted that old taxation records are valuable genealogical resources; indeed, it was the sovereigns' concerns for collecting the taxes that was the impetus for the use of surnames in many societies.].

We are now at the point where all but the most naive in the contemporary genealogical community in America are at least generally aware of how the IRS's data security (mal)practices affect their genealogical research.

It has come to the attention of this tax lawyer that the Pennsylvania Department of Revenue has issued the following pronouncement:

"Beginning with the 2014 income tax filing season, the department instituted new security measures to identify and intercept fraudulent refund filings. As part of this initiative to ensure refunds are issued only to their rightful owners, taxpayers may be asked to confirm their identities before refunds are issued."

How this new initiative fares remains to be seen, but people in the taxation community will certainly be watching to see whether the Pennsylvania Revenue Department is ahead of the IRS on the power curve. Pennsylvania's practices and procedures will play into the discussion as to whether the recent restrictions on the Death Master File access (of which I posted on 7 January 2014) are sufficient or are overly broad.

It is a discussion in which the genealogical community must participate.


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Taking a Stand in Genealogyland

by Kenneth H. Ryesky January 20th, 2014 3:37 am

"Just how tone deaf is the genealogical community?" asks Brad in his post of 16 January 2014, imploring the leadership in Genealogyland to take a stand against the misuse of public information for nefarious if not lethal purposes. My own posting of 7 January 2014 mentions a loophole in the latest Federal budget agreement's restriction upon Death Master File (SSDI) access; various members of the genealogical community are now pondering the prospects of at least some genealogists obtaining Commerce Department certification for the early access loophole.

As this posting is being written, the Commerce Department is working on its proposed regulations for the DMF early access program; these, we are assured, will soon appear in the Federal Register for public comment.

Many existing professional qualifications are accepted as valid credentials for various purposes by various governmental agencies. The Internal Revenue Service's Office of Professional Responsibility, for example, accepts bar admission or CPA certification as a valid credential for representing taxpayers in matters before the agency. Many government agencies, Federal and state, accept the Certified Professional Contracts Manager or the now superseded but grandfathered Certified Purchasing Manager designation as a substitute for some qualifying experience in procurement and acquisition jobs (my own C.P.C.M. and C.P.M. certificates gave me a fair degree of career mobility within the Department of Defense when I needed it, but lapsed after I transitioned from DoD to the IRS).

As with many other affinity groups, genealogists have elevated themselves to professional status through the use of the certification process. Now that Congress has tasked the Department of Commerce with overseeing a process for early DMF access certification, genealogists are pondering how their own certification credentials might be used to bootstrap their way to the coveted Commerce Department approval.

If professional credentials such as the Certified Genealogist title are to be accepted by the people in Commerce, then the CGs will need to clearly and visibly build confidentiality and ethics into their own certification program. Even more basic is the need to make the criteria for CG certification, including matters of ethics and confidentiality, open and transparent.

Which all brings us back to taking a stand in Genealogyland.


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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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Congress is Plugging the Wrong Hole

by Kenneth H. Ryesky January 7th, 2014 1:41 am

[This piece originally appeared in The American Thinker on 20 December 2013]

Section 203 of the budget bill passed by Congress restricts access to a Social Security Administration database known as the Death Master File. The misguided passage of this restriction will carry negative side effects and fail to achieve its purpose.

Section 203 embargos the release of the DMF for three years. To be sure, early access to the DMF is provided to individuals having "a legitimate fraud prevention interest" or "a legitimate business purpose," but such individuals would need to run the gauntlet to achieve clearance under a not-yet-established Department of Commerce certification program. This would be unduly burdensome for, say, an estate executor who, on a one-time basis, needs to ascertain the heirs of a decedent.

The passage of this provision has been sold to the Congress as a miracle cure for a multi-billion dollar fraud scheme which collectively inflicts untold economic and psychological harm upon the victims: Tax fraud through identity theft.

For many years, fraudsters have filed with the Internal Revenue Service fabricated tax returns which use stolen identities as entries for the taxpayer and/or a claimed dependent, and which show a refund owed to the taxpayer, thereby defrauding the public fisc when the refund is issued (as it almost always has been). This has even been done by prison inmates, among other perpetuators. A Treasury Inspector General for Tax Administration (TIGTA) report confirms that stolen identity tax fraud entails millions of tax returns and billions of dollars. When the stolen identities are those of deceased individuals, particularly deceased young children, the collateral damage inflicted upon the surviving families is especially grievous.

And, due to some heedless inattention on the part of the IRS, one source of pilfered identities has been the DMF. The shutdown of DMF access accordingly has played quite well in the Congress, for it entails both a "feel good" sense that criminals will be stymied, and a seeming prospect to stanch a significant hemorrhaging of the public purse.

Social Security Numbers were originally intended to be just that, and not used for other purposes. But the uniqueness of the SSN made it convenient for use by the banking and financial industry, and by the taxation authorities. The Tax Reform Act of 1976 amended the Internal Revenue Code to require that the taxpayer's SSN be used as the identifier on a taxpayer's tax return.

During the 1970's, Ronald Perholtz, then the U.S. Postal Service's General Manager of Accounting, realized that the USPS was cutting many pension checks to deceased retirees, and that the Social Security Administration had data which could be used to prevent this and thereby save the Postal Service millions. Perholtz resigned his position, founded his own consulting firm, and proceeded to market his services to the government. Perholtz also developed another service for hire, verification that pensioners were in fact still among the living; his efforts culminated in a consent settlement with the Social Security Administration under which the SSA would publicly avail the DMF under the Freedom of Information Act. Other entrepreneurs have since taken to purchasing the DMF and purveying it as the Social Security Death Index. [Alas, Perholtz would later go to prison for contract fraud in his dealings with the government.].

The DMF/SSDI has since been used in many industries to prevent fraud. But fraud prevention is not the database's only useful purpose. Medical researchers, for example, need it for long-term projects to ascertain the living/deceased status of their subjects.

Genealogical researchers also use the DMF/SSDI extensively; such research is instrumental for purposes such as identifying and finding relatives of military or civilian casualties or crime victims, repatriating artwork stolen during the Nazi era, and building family health and medical history records (which the Surgeon General encourages Americans to do). Various groups having specialized family history research interests include Native Hawaiians who must prove their descent for certain housing guarantees, Ashkenazi Jewish women whose susceptibility to breast cancer requires knowledge of family breast cancer incidence in order to make appropriate healthcare decisions, and African-Americans who seek to reconnect descendants of siblings who were separated from one another during the slavery era.  These vital pursuits are now threatened because family research is not an activity for which early access to the DMF is specified.

The fraudster community eventually learned that one entity that did not verify its data with the DMF was the IRS. By 1998, when Alan Scott was convicted of filing 20 false income tax returns with the IRS using stolen identities, the IRS could no longer claim ignorance of the problem. Yet, more than a decade later, the IRS still fails to adequately assist the good faith tax return filers whose identity has been stolen by fraudsters.

The IRS's dismissive passivity in failing to verify the legitimacy of the filed returns has been quite ignominious. Imprimis, the tactic of falsely claiming someone else's child (often deceased) as a dependent can be readily detected up front because the information from the Form SS-5 Application for a Social Security Card requires that the parents' Social Security Numbers be provided for a child under the age of 18. This information is obviously in the government's database, and a red light should flash whenever the SSN of the taxpayer or the taxpayer's spouse does not jibe with that of the parent of the child when the child's SSN was first assigned.

Moreover, the IRS has assumed that the first tax return to be filed is the legitimate one, and the subsequently-filed return is that of the impostor. Such an assumption is questionable at best, inasmuch as the legitimate good faith tax return filer needs to assemble and compile complete and accurate information for the tax return, while, as amply demonstrated, the fraudster's return will suffice with randomly-concocted numbers which are not dependent upon any statements from banks, brokers, mortgage companies, or other third-party payers or payees.

A recent TIGTA report has found that the overwhelming majority of stolen identities used on tax returns are now those of living individuals. So cutting off access to the DMF may well protect deceased children, but will not stop identity theft tax fraud.

The vast databases of personal information required under ObamaCare can only provide greater opportunity to steal the identities of living persons; the ObamaCare incentives for employers to convert full-time employees to part-time (and strictly limit the hours for existing part-timers) in order to avoid having to provide healthcare insurance can only attenuate the employees' group identity and loyalty (and may even conjure up thoughts of vengeance against the employer); and the increased general costs of healthcare under ObamaCare can only provide increased pressure to steal an identity not to defraud the IRS, but to obtain healthcare itself.

Section 203 abridges access to a valuable resource which should be in the public domain; the provision was enacted to cover for the IRS's abject failure to protect the American people with proper data stewardship practices.

The Talmud recounts a colloquy where Rabbi Joseph says to Rabbi Abaye, "It is not the mouse that is the thief but the hole." Congress would have us (and perhaps themselves) believe that it has plugged a large hole in the Federal coffers. But the mice still forage and there are even larger holes for them to access the granary. Future GAO and TIGTA studies are likely to find substantial gaps between the savings projected by the proponents of Section 203 and the savings, if any, actually achieved by it.


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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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