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Privacy Concerns Fuel Vital Records Access Restrictions

by Bradley Jansen December 30th, 2014 12:16 pm

Hat tip to Dick Eastman who posted "Privacy Concerns Raised about Vermont Town Reports of Births, Marriages, and Deaths" on his blog.  As he explained, "some [Pittsford,Vermont] residents are concerned that publishing birth, marriage, civil union and death names in the annual town report harms their privacy."  These concerns (sometimes very real and justified, sometimes not) are fueling the movement to restrict access to vital records that is quietly sweeping the country.  More here:

http://www.rutlandherald.com/article/20141224/THISJUSTIN/712249902

The Federation of Genealogical Societies, among other groups, has been warning about the loss of access to vital records for a few years now.  Almost a year ago, there was this update, "We expect the introduction of state legislation based on the unapproved 2011 Model Act and Regulations." referencing this report from March 2013:

The registration of births, deaths, marriages, and divorces is done on the local level, that is, by 50 states, 5 territories, the City of New York, and Washington, DC. Information contained in those records is shared with U.S. government entities such as the Social Security Administration.

To ensure successful sharing, the U.S. government has made available text that states may elect to use for law as well as for regulations describing how those laws are implemented. States are not required to conform to the Model Act and Regulations. Each state, city, or territory is free to implement laws and regulations for its own needs. Nonetheless, the Model Act can have significant impact. For example, the movement of state vital records offices into state Departments of Public Health was first advised by the 1977 version of the Model Act.

Beginning in 2009, a committee formed by the U.S. Department of Health and Human Services convened to update the 1992 Model Act. The National Association for Public Health Statistics and Information Systems (NAPHSIS) approved the update by resolution 8 June 2011. NAPHSIS is an association of representatives from the 57 states, cities, and territories. Members of the organization had participated in the drafting of the new Model Act.

Previous iterations of the Model Act have gone through periods of public feedback and revision before approval by the federal agency involved. The 2011 revision has not yet been made available for public review by DHHS (see their note here) and so it is not yet considered final. In the meantime, several state public health departments developed legislation that conformed to the unreviewed version of the Model Act. This past Friday, 1 March 2013, at noon Eastern time, NAPHSIS independently released the 2011 revision of the Model Act on its website. It can be downloaded here.

What does the new version do? It incorporates changes in technology over the twenty years since the 1992 version. It also changes the records closure periods. Please compare these periods to the ones currently in law in the states in which you research. If they differ, it would be wise to work with local genealogy societies to monitor for the introduction of state legislation affecting records closure.

  • Birth records closed for 125 years.
  • Marriage and divorce records closed for 100 years.
  • Death records closed for 75 years.

 

Unless family history researchers are comfortable with these proposed delays in access to vital records, they'd we be well served working to understand the underlying privacy concerns and actively addressing them.


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EU Medical Privacy Rule Could Hamper Genealogical Research

by Bradley Jansen December 29th, 2014 8:40 am

Alan McQuinn at the Information Technology & Innovation Foundation wrote an op-ed "E.U. data privacy rules threaten medical research" recently.  He rightly raises the fact that the reality of circumstances is often more complicated than presented.  In this case, new medical privacy rules that sound great at first blush might have negative consequences for medical research and ultimately people's health.  Genealogists won't be none to pleased either.

Explains the op-ed,

Last March, the European Union proposed the General Data Protection Regulation (GDPR). The new privacy rules would dramatically harm the ability of researchers to conduct medical research throughout all of its member states. If allowed to pass in its current form, many in the medical community believe the GDPR could cost the European Union not only medical knowledge and money, but human lives as well.

The GDPR was created to protect Europeans’ personal data. In pursuit of this goal, it forces organizations that process personal data to obtain informed consent each time they want to use that data for a purpose other than for what it was originally collected. As the Center for Data Innovation’s Travis Korte has argued, while these regulations have chilling effects on many big data initiatives, their greatest potential for harm is in medical research.

He continues:

There are many solutions that could be incorporated into the GDPR to help it address these problems. For use of data after death, the GDPR should offer a mechanism to “donate your data to science,” giving blanket consent for a patient’s data to be used after their death. This would allow researchers that are studying rare diseases with limited access to patients to achieve effective sample sizes. The GDPR should also be more explicit about when organizations must seek consent to reuse data, or allow organizations to ask once to obtain consent for the reuse of data for multiple purposes. This “one-time consent” framework would reduce costs and regulatory uncertainty for organizations, as well as help address the problem of consent after death.

and concludes, "policymakers should craft narrowly targeted rules to mitigate specific harms, protect individual privacy and ensure medical research can flourish."

With genetic genealogy offering new avenues for research and medical genealogy offering real world insights that could help people with their health, we should tread carefully on how to both protect privacy and research responsibly.

Best to read the whole op-ed here:
http://fedscoop.com/eu-data-privacy-rules-threaten-derail-medical-research/


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Facebook Privacy

by Bradley Jansen December 27th, 2014 6:36 pm

Like many other genealogists (amateurs at least), I use Facebook a lot.  The crowdsourcing and local knowledge aspects greatly help my research.  Unfortunately, Facebook isn't usually known as a champion for privacy--though Facebook is active in Digital Due Process and other pro-privacy activities.

Facebook, like many sites, sometimes changes its policies, and it behooves us to keep up with the changes.  A Huffington Post article explains some recent and forthcoming changes and how to protect your privacy there:

"How To Stop Facebook From Getting More Of Your Info, In 2 Steps"

http://www.huffingtonpost.com/2014/06/12/facebook-ads_n_5488980.html?ncid=fcbklnkushpmg00000063

Importantly, the article directs one to this site:

http://www.aboutads.info/choices/

as a way to customize ads and opt-out through your browser.

Consumers have lots of tools, if they're interested.