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Genetic Genealogical Privacy Standards

by Bradley Jansen January 18th, 2015 1:12 pm

The Genetic Genealogy Standards Committee recently came out with a document on Genetic Genealogy Standards that can be found here:

http://www.thegeneticgenealogist.com/wp-content/uploads/2015/01/Genetic-Genealogy-Standards.pdf

My take at first blush is that it's good that the genealogy community continues to update its standards with the times--and that it increasing recognizes the importance of privacy in those standards.

For example, there are several sections where the standards address areas of concern to this blog:

2. Testing With Consent. Genealogists only obtain DNA for testing after receiving consent, written or oral, from the tester. In the case of a deceased individual, consent can be obtained from a legal representative. In the case of a minor, consent can be given by a parent or legal guardian of the minor. However, genealogists do not obtain DNA from someone who refuses to undergo testing.1

3. Raw Data. Genealogists believe that testers have an inalienable right to their own DNA test results and raw data, even if someone other than the tester purchased the DNA test.

6. Privacy. Genealogists only test with companies that respect and protect the privacy of testers. However, genealogists understand that complete anonymity of DNA tests results can never be guaranteed.

7. Access by Third Parties. Genealogists understand that once DNA test results are made publicly available, they can be freely accessed, copied, and analyzed by a third party without permission. For example, DNA test results published on a DNA project website are publicly available.

8. Sharing Results. Genealogists respect all limitations on reviewing and sharing DNA test results imposed at the request of the tester. For example, genealogists do not share or otherwise reveal DNA test results (beyond the tools offered by the testing company) or other personal information (name, address, or email) without the written or oral consent of the tester.

9. Scholarship. When lecturing or writing about genetic genealogy, genealogists respect the privacy of others. Genealogists privatize or redact the names of living genetic matches from presentations unless the genetic matches have given prior permission or made their results publicly available. Genealogists share DNA test results of living individuals in a work of scholarship only if the tester has given permission or has previously made those results publicly available. Genealogists may confidentially share an individual’s DNA test results with an editor and/or peer-reviewer of a work of scholarship. Genealogists also disclose any professional relationship they have with a for-profit DNA testing company or service when lecturing or writing about genetic genealogy.

The committee explains their process, membership, review of comments, etc., all here
http://www.geneticgenealogystandards.com

It was pointed out that many of the members on the committee have ties to 23andMe and Ancestry.com which should have been disclosed properly.

The question then remains whether the community will be able to self-regulate.  We will have to come back to this subject soon.


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23andMe and Genentech reach deal on genetic research

by Bradley Jansen January 12th, 2015 11:11 am

According to a Forbes article, 23andMe has reached a very lucrative deal with Genentech--the first of nearly a dozen agreements the company has reached with pharmaceutical and biotech companies.

Explains the "Surprise! With $60 Million Genentech Deal, 23andMe Has A Business Plan" story:

Such deals, which make use of the database created by customers who have bought 23andMe’s DNA test kits and donated their genetic and health data for research, could be a far more significant opportunity than 23andMe’s primary business of selling the DNA kits to consumers. Since it was founded in 2006, 23andMe has collected data from 800,000 customers and it sells its tests for $99 each. That means this single deal with one large drug company could generate almost as much revenue as doubling 23andMe’s customer base.

“I think that this illustrates how pharma companies are interested in the fact that we have a massive amount of information,” says Anne Wojcicki, 23andMe’s chief executive and co-founder. “We have a very engaged consumer population, and these people want to participate in research. And we can do things much faster and more efficiently than any other research means in the world.”

The prospects of advances in genetic research should not be unappreciated, but the story raises the privacy implications of the 23andMe customers:

People who have bought 23andMe kits and agreed to donate their data to research (that’s about 600,000 of the company’s 800,000 customers) automatically consent for 23andMe to sequence their genomes. 23andMe says that it is also able to share anonymous and pooled data about their self-reported health traits without asking. But Genentech wants even more: it wants to look at health and genetic data on an anonymous but individual basis. For that reason, the company will have to ask customers if they want to enter the study.

Let's hope 23andMe has worked out the way to respect consumer privacy and promote genetic research!


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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.


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How the DNA Helix Twists on Privacy, Property, and Paternity in the Probate Courts

by Kenneth H. Ryesky August 20th, 2014 5:27 am

Following an adventurous life that brought him from Vietnam to America, Truong Dinh Tran settled in New York, where he invested in various business and real estate ventures, and died a centimillionaire in 2012. Having left no last will and testament to dispose of his worldly assets, his property will be disposed of under New York's intestacy laws. Truong was known to have had intimate relationships with multiple women during his lifetime. Not surprisingly, five persons alleging that they are Truong's grandchildren now seek a piece of the pie.

At the behest of the five individuals, a hair sample was removed from Truong's body by the New York City Medical Examiner's office, and was given to the DNA Diagnostics Center laboratory for testing. The laboratory, obviously aware that sensitive legal issues may explode in its face in light of the conflicting requests from various parties, has been reluctant to cooperate with the five putative grandchildren or anyone else.  The five have brought an action in the New York County Surrogate's Court, praying for an order requiring the Temporary Administrator to authorize the DNA Diagnostics Center to do the testing on the hair sample, and, if such is impracticable or inconclusive, to authorize the lab to use information from prior DNA tests to determine kinship.

The Court specifically found that the hair sample is an asset of the Estate, and that the Estate fiduciary (in this case the Temporary Administrator) alone is empowered to direct testing on the sample. The Court specifically authorized the Temporary Administrator to direct the appropriate actions with respect to any DNA samples of the decedent. The Court declined to order any specific tests until a viability study indicates which particular procedures would likely be productive.

The Court directed that the costs of the testing be borne by those seeking such tests, but without prejudice to demand reimbursement from the Estate.

New York's Surrogate's Court Procedure Act § 2225(b) sets the standard. It mandates "that diligent and exhaustive efforts have been made from all available sources to ascertain the existence of distributees, or members of a class of devisees, legatees or beneficiaries" before the Court can determine that no such individuals exist.

Under circumstances such as those in Tran's Estate, DNA samples are among the "available sources" in which "diligent and exhaustive efforts" be made. The information relevant to DNA testing carries obvious privacy issues that reach well beyond the construction of family tree charts, most notably personal medical issues not only of the decedent, but of the surviving putative heirs. Mismanagement of the decedent's estate, which, in days of yore, risked little more than the wasting and squandering of Estate assets, now implicates personal information and privacy concerns of individuals other than the decedent. The "diligent and exhaustive" search process needs, in the first instance, to be managed by a responsible and accountable individual.

The Tran case is useful precedent for doing so by explicitly defining the DNA sample held by the lab as an Estate asset, thereby placing the estate fiduciary in the driver's seat for conducting the search.

 

Matter of Tran, 2014 NY Slip Op 32056(U), N.Y.L.J., 8 August 2014, p. 22, col. 3, 2014 N.Y. Misc. LEXIS 3501, (Surr. Ct. N.Y. Co., 2014).


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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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Unsealing divorces in New York

by Kenneth H. Ryesky May 7th, 2014 8:15 pm

Col. Holland Sackett Duell was a noted New York lawyer, decorated military officer, politician, and yachtsman.  The Colonel's life was interesting; sufficiently interesting that author Christopher Madsen now aspires to write a biography of him.

 

Duell was twice married, first to Mabel Halliwell and then, after his divorce from Mabel in 1925, to Emilie Brown.  As with other divorces in New York, the court of Duell's divorce from Mabel is sealed.  Section 235 of New York Domestic Relations Law basically seals the court records of all matrimonial actions for one hundred years, absent a court order issued for good cause.

 

Madsen, having been rebuffed by the Westchester County Clerk in seeking access to the file, brought a proceeding for a court order, claiming that the book he seeks to write will be "an academic work of historical importance," and speculating that information sealed in the divorce case file might contain some facts of public interest for his tome in the making.

 

The last of Holland and Mabel's children died in 2003, and Madsen's petition to the court was unopposed.  Nevertheless, Justice Francesca E. Connolly denied Madsen's petition for an order to unseal the file.  Madsen v. Westchester County Clerk, 2014 N.Y. Misc. LEXIS 1899, 2014 NY Slip Op 50675(U) (Sup. Ct., Westchester Co. 2014).

 

The statute was last tweaked by the New York State Legislature in 1979, way back before modern text media technology altered the personal privacy scene.  Even then, the statute provides that the only information about a sealed matrimonial case file to be made available to a curious member of the public is a "certificate of disposition" which effectively says only that the divorce (or child custody decree) was granted; evidence and testimony are shielded for 100 years absent a compelling reason.

Justice Connolly* wrote in her opinion:  "[F]ishing expeditions into sealed records should not be permitted; rather, a petitioner seeking access to sealed records must be able to articulate and particularize the relevance of the information sought to an important pending matter.   ...  Public officials charged with safeguarding records containing the intimate details of litigants' lives bear a 'heavy responsibility'  ...  By sparingly exercising their discretion to permit access to these records, courts promote an atmosphere of privacy for litigants that encourages open and honest disclosure in the context of matrimonial litigation."

Justice Connolly did not consider Madsen's literary pursuits sufficient reason to unseal the record, even though the divorcing couple and all of their children are now deceased and would not suffer embarrassment from the disclosure.

The New York scheme, then, strikes a balance between the free flow of information and the need for privacy.

Madsen will just have to wait until 2025 to write about whatever lurid details attended to the Colonel's divorce.

 

[*  In New York, the lowest courts of general jurisdiction are the Supreme Courts, to be found in each county; the jurists who sit on the benches wearing the black robes are invested with the title "Justice" and not "Judge."].

 

 


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What's Behind the Adoption?

by Kenneth H. Ryesky April 23rd, 2014 10:18 am

 

 Arnold Levien was an accomplished engineer, and perhaps more accomplished still as a real estate investor.  At the time of his death in 1979 he was a multimillionaire, and his Will established a Trust of which his children and/or grandchildren were income beneficiaries, pending the Trust's termination.  The terminating event for the Trust was the attainment of age 35 of the last of his surviving great-grandchildren who was alive on the date of his death.  Upon termination, the Trust principle was distributable to Arnold's surviving great-grandchildren.

 

The trustees of the Trust were empowered, in their absolute discretion, to invade the principle for early distribution to an income beneficiary on account of "serious illness, misfortune or other emergency affecting any such beneficiary."

 

Two of Arnold's grandchildren, Stephen and Harlan (apparently neither of whom is anything resembling a slouch in his own right), are afflicted with muscular dystrophy.  Neither has sired any biological natural children.  Their respective (and apparently coordinated) requests to the trustees for early Trust principle distribution on account of their medical situations were rebuffed; they sued the trustees.  The lawsuit was settled in July 2012 by agreement giving Stephen and Harlan each a six-figure cash payment, in return for which, they "relinquish all rights as beneficiaries of income and/or principal of the Trust" and would "make no further requests of the Trustees for income or principal."

 

As will be discussed shortly, the settlement agreement had a gag clause prohibiting its terms from being disclosed to others.

 

In October 2012, Stephen and Harlan each respectively adopted an adult son, said adoptions having been validly formalized in Texas courts.  Apparently, one of the adopted sons is older than his adoptive father.  The Trustees of the Trust were apprised of these adoptions shortly thereafter.

 

In February 2013, the last of Arnold's surviving great-grandchildren alive at Arnold's death attained the age of 35, thereby terminating the Trust.  Kenneth Ives and Parvin Johnson, Stephen and Harlan's adoptive sons (this Kenneth not to be confused with Kenneth Levien, one of the trustees, nor with the author of this posting) claimed their respective shares of Trust principle as Arnold's great-grandchildren (each share being worth in excess of a million dollars before taxes), and the trustees of the Trust sought declaratory judgment that Kenneth and Parvin were not entitled to shares of the Trust as Arnold's great-grandchildren.

 

In a verbose ruling [Levien v. Johnson, 2014 N.Y. Misc. LEXIS 1802, 2014 NY Slip Op 30995(U) (Surr. Ct. N.Y. Co. 2014)], the New York County Surrogate's Court dealt with the Trustee's relevant contentions as follows:

 

A.  Arnold did not intend to benefit non-biological descendants:  The laws of New York (and other states) recognize offspring by adoption on par with biological offspring, and Wills are so construed unless a contrary intention is specified.  No contrary intention on the part of Arnold was specified in his Will, and none was otherwise proven.

 

B.  The adoptions were unique and unforeseeable if not a sham:  Adoption is specifically recognized as a valid method of creating parent-child relationships under the laws of New York (and other states).  Adoption is foreseeable and, inasmuch as no misrepresentations were made to the Texas courts in the course of the adoption proceedings, the adoptions were valid and not sham.

 

C.  Stephen and Harlan had a duty to disclose their anticipated adoptions to the Trustees during the course of the settlement negotiations in the prior lawsuit:  No such duty was shown, and, even if it did exist, it would not affect the status of Kenneth and Parvin as adoptive children of Arnold's grandchildren.

 

D.  The distributions of principle to Kenneth and Parvin would circumvent the settlement agreement in the prior lawsuit:  Though the settlement agreement was intended to bind the "heirs, executors, successors, and assigns" of Stephen and Harlan, it did not in any way affect Stephen and Harlan's rights and capacities to adopt.

 

 

And so, if this court decision stands, Kenneth and Parvin will get their shares from their adoptive great-grandfather's life labors.

 

But the Court did not dismiss the trustees' claims against Stephen and Harlan for breach of contract.  The trustees contend that the only way Kenneth and Parvin could have learned of the terms of Arnold's Will was through Stephen and Harlan; Kenneth and Parvin contend that they knew that information before the settlement agreement was entered into.  On the disputed facts, a trial is necessary, and dismissal on motion is inappropriate.  Never mind that Arnold's Will, having been duly probated, is a matter of public record.

 

The foregoing is an abbreviated synopsis of a very wordy judicial opinion; the reader is free to read the original opinion if he or she so desires.

 

Never mind that there obviously was a scheme involved here, the propriety of which shall not now be taken to the mats.  The decision in the case brings forth some questions hitting at the intersection of genealogy and privacy.  What are the uses and misuses of adoption?  How, if at all, should adult adoptions be treated differently than infant adoptions or pre-teen adoptions or teenager adoptions?  How open or private should side deals behind adoptions be? 

 

Regardless of whether or not this particular court decision stands (the dollars at stake here may well be impetus for an appeal), these questions will likely be reprised somewhere, at some future time, in some form.

 

 

 

 


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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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