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Betty Malesky, genealogist and privacy advocate

by Bradley Jansen June 23rd, 2013 11:32 am

Kudos go out to Betty Malesky, certified genealogist, who is helping navigate the changing waters of privacy, technology and genealogy.

She has graciously given me permission to reprint this article:

http://www.gvnews.com/lifestyle/genealogy-today-treat-living-persons-with-discretion/article_beb7dcc2-da99-11e2-ae39-0019bb2963f4.html?mode=jqm

Today: Treat living persons with discretion

By Betty Malesky

Usually we all have a number of living persons included in our genealogy. Sooner or later, many of us will publish our ancestry, either on paper or on the Internet. Living persons require special treatment, particularly before uploading a genealogy file to the Web.

We need to be discreet in disclosing information about siblings, parents, grandparents, aunts, uncles, or any other relatives we may include who are still alive.

We don’t want to be the object of a lawsuit for defamation or invasion of privacy because we disclosed information about a relative that he/she considers personal or privileged information.

One can wind up the object of a lawsuit even if the facts divulged are true. Illegitimacy, divorce or a mental disorder may be public record, but that does not automatically give you the right to spread the word to the world if the person(s) involved is/are still alive.

Even if we do not expect a wide audience for a publication, we must still respect our relative’s right to privacy about their personal lives. An email message or a post to a blog today could wind up with hundreds of readers over time. With today’s search engines, nothing on the Internet can be considered private.

People today are wary of identity theft, which is another reason it is unwise to put relatives’ birth and marriage dates online even if they do not object.

Linking a living person to his/her parents is also unwise. The obvious solution is to not include any living persons in a family tree posted online.

For example, assume you are posting a computerized family tree that includes your deceased grandparents and their eight children, three of whom are still alive. Alter your data output before posting by removing the names and any data about the living. Indicate living offspring by simply changing their names to “Living” and removing all other information about them.

If you are publishing a book and would like to include as many descendants as possible, contact those who are still alive. Tell them what you are doing and ask their written permission to be included in your publication.

If they object, they will let you know. If they give you permission, retain it in your files and go ahead with your project without having to worry about offending someone.

If you plan to include details beyond vital information, be sure to inform your relative(s) so that their permission to publish includes every detail being considered. While they may be aware that they inherited the family’s genetic tendency to a particular condition or disease, they may not want it broadcast to the world at large.

When in doubt about what you are doing, ask yourself, “Is it legal and is it ethical?” If the answer is that it’s legal but not right, revise your plan and keep the information in your personal files closed to the public.

Some persons may have no problem sharing the challenges of dealing with a particular disease, such as Parkinson’s, inherited blindness, cancer or early-onset Alzheimer’s. Others would be appalled to know their affliction was common knowledge.

Remember to always contact each living relative before including him/her in your genealogical publication. The worst that can happen is they say “no” and cause you to modify your planned publication.

Betty Lou Malesky, certified genealogist, is past president of the Green Valley Genealogical Society. Contact her at bettymalesky@ cox.net. The society’s Web site iswww.rootsweb.com/~azgvgs/.


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Creepy or cool--3D masks from DNA

by Bradley Jansen June 18th, 2013 4:10 pm

Reading this story of 3D masks made from anonymous DNA collected in public space, I was decidedly on the "creepy" side.  But when I got to the (we'll generously describe as forensic help) part where the artist is helping police solve a crime, it gave me pause.

Article here:

http://blogs.smithsonianmag.com/artscience/2013/05/creepy-or-cool-portraits-derived-from-the-dna-in-hair-and-gum-found-in-public-places/

 

After pausing and getting  past my initial getting creeped out, perhaps there would be a role in Thre future with a more mature industry for long dead individuals where we have DNA but no portraits or pictures.

One lab was recently working on the DNA of some Civil War soldiers from the USS Monitor:
http://www.mauinews.com/page/content.detail/id/559300/Oahu-lab-hopeful-DNA-can-identify-Civil-War-remains.html?nav=5031

Perhaps the artist could show us what they looked like.  I didn't e realize we'd been extracting DNA from this era for a while, including this 1993 story

http://www.ncbi.nlm.nih.gov/pubmed/8426158

I have in my head but couldn't find quickly with some internet searches that there is a government repository of, well, the parts of remains from soldiers (I think from the Civil War).  I wonder what the ethical questions are to extract the DNA?  Even for descendants?

If we went that far, would you want a 3D mask of your ancestor?

 


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When privacy and history collide

by Judy Russell June 18th, 2013 2:51 pm

When does an individual have a right to be forgotten? How does that square -- can it be squared -- with the right of society to know what people did, and why?

These are questions up for debate right now as the European Union considers its privacy laws and the scope of the so-called “right to be forgotten.”

And it's a matter of deep concern to archivists, genealogists and family historians as we consider the value of those small bits of personal history contained in yesterday's letters, diaries and scrap paper ... and in today's email, tweets and Facebook posts.

If every person's individual right to privacy is honored so greatly that we can all edit our own personal history to fit our own sensitivities, what happens to the truth?

Read more at Privacy and history: on a collision course?


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Genetic Sequencing in the Faroe Islands -- and in America

by Kenneth H. Ryesky June 10th, 2013 7:44 pm

 

Segueing from Brad's 17 April 2013 posting:

 

The July/August 2013 issue of Discover magazine has an article on page 12 by Brendan Borrell entitled "Sequencing an Entire Country."  The clickable link to the article does not as of this writing appear on the Internet version, but may be made available in the future.  The synopsis of the article is that the Faroe Islands, which already has electronic medical records for its small populace, has begun a project to move towards universal genetic sequencing, in order to compliment the EMRs.  One impetus is the occurrence rate of certain genetic conditions in small island nation with a homogenous gene pool.

 

Query:  How would such a project go over in America in light of the Genetic Information Nondiscrimination Act?  What sort of abuses might employers or insurance carriers resort to, GINA notwithstanding?  How secure would individuals' genetic info be, in reality and in perception, given the current involvement of so many persons and entities (governmental agencies, employers, insurance carriers, health care providers, et cetera) in the information-sharing processes inherent in the healthcare system?

 


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Jane or John: Shielding the Past of a Transgendered Individual

by Kenneth H. Ryesky June 4th, 2013 10:08 pm

 

"John Doe" became professionally licensed by the State of New York, and logged a clean and honorable professional record during his licensure as such.  The profession, at least as Doe practices it, entails daily interaction with personnel on building construction sites.  For reasons quite personal, "John Doe" apparently underwent hormone treatment and surgery and assumed the name and identity of "Jane Doe," with the blessing of the New York State Supreme Court (which, for the benefit of you people who have not lived in or near the State of New York, is the lowest court of general jurisdiction in the State, with each county having its own, and is not to be confused with the highest state court, the Court of Appeals of the State of New York).

 

Having duly become "Jane Doe" in the eyes of the law, she then sought from the New York State Education Department Office of Professions (NYSED)  a new professional license under a new number and her new name, with no references to her former name or license number.  "Jane Doe" expressed credible concerns that public knowledge of her transgendered status would cause the ruination of her professional practice, and, worse yet, expose her to a great risk of verbal if not physical assault at the job sites she regularly frequents as part of her livelihood.

 

The NYSED refused.  "Jane Doe" then took the matter to court (again, the Supreme Court, the lowest tribunal of general jurisdiction and the usual court of first instance for such matters).  Justice Sam D. Walker of the Westchester County Supreme Court agreed with "Jane Doe" and ordered the NYSED to issue a new license to "Jane Doe," and to delete any references to "Jane's" former name or licensure.

 

And, not to be hypocritical, Judge Walker released his opinion under the full caption "In The Matter of the Application of John Doe Petitioner, For Leave to Assume the Name of Jane Doe" and redacted the case's index number.  The decision date was 16 May 2013.   As of this writing, the full text of the case has not been posted in the New York State Reporter's slip opinions or official reports, and may or may not be so posted in the future.  The full text of the case is, however, available on the New York Law Journal's proprietary website, and is cited as N.Y.L.J.  1202601879249 (Sup. Ct., Westchester Co., 5/16/2013).  [The copyright will now be respected, inasmuch as the New York Law Journal has published some of my own writings in the past and I can easily envision submitting more at some time in the future.].

 

My commentary on the Doe case:  A number of years ago, in the course of litigation, my brief and the brief of my adversary each cited the same New York Court of Appeals case, but for diametrically opposite propositions.  The Doe case may likewise be susceptible to citation by both open records and privacy advocates.  It is noted, however, that Judge Walker's analysis was specifically tailored to "Jane Doe's" individual situation, balancing the public's right to know against the potential of harm from public knowledge, with due regard for the factor that "Jane/John's" unblemished professional record presents less of an urgency to protect the public than would pertain to a problematic professional past.

 

From the genealogist's perspective, knowledge of "Jane Doe's" prior life as "John Doe" may well lead to a piece of a jigsaw puzzle as it were, but would likely not be the sole or major record to track down the individual.  Judge Walker's decision in Doe was a very appropriate decision for the particular case, but there remains the chance, perhaps negligible or perhaps significant, that the decision might some day serve as precedent for what may be unduly severe restrictions on public access to other public records databases.


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SCOTUS Addresses Genetic Privacy

by Bradley Jansen June 3rd, 2013 3:19 pm

Today the Supreme Court of the United States handed down a decision putting genetic privacy on the front page.  It's not much of a stretch to see the day when law enforcement--fresh with the DNA of those only arrested, not convicted, see the genealogical big data bonanza coupled with genetic genealogy as data gold mine.

Such a scenario raises serious questions that would behoove the genealogical community to address sooner rather than later:  Do companies that test for DNA results and/or host such information have policies in place determining under what circumstances they share information with law enforcement without the consent of their customers?  What protections do relatives with similar genetic genealogies have?  What clarity is there for law enforcement to expedite legitimate requests?

In Maryland v King (PDF), the SCOTUS held that suspects of "serious crimes" don't have a Fourth Amendment protection from unreasonable search and seizures that would stop law enforcement from obtaining and testing one's DNA.  Justice Antonin Scalia, joined by the "liberal" justices dissented,

The Fourth Amendment forbids searching a person for evidence of a crime when there is no basis for believing the person is guilty of the crime or is in possession of incriminating evidence. That prohibition is categorical and without exception; it lies at the very heart of the Fourth Amendment. Whenever this Court has allowed a suspicionless search, it has insisted upon a justifying motive apart from the investigation of crime. It is obvious that no such noninvestigative motive exists in this case. The Court’s assertion that DNA is being taken, not to solve crimes, but to identify those in the State’s custody, taxes the credulity of the credulous.  And the Court’s comparison of Maryland’s DNA searches to
other techniques, such as fingerprinting, can seem apt only to those who know no more than today’s opinion has chosen to tell them about how those DNA searches actually work.

This decision comes in the context of rapid developments in genetic genealogy--and with prices falling the inverse rise in popularity.  MasterCard is teaming up with the government of Nigeria to integrate biometric information into their national ID which would also act as a payment card--one step away from collating genetic, genealogical and financial information with government databases.

Perhaps more likely to get popular attention was the news of Angelina Jolie's decision for a double mastectomy after a genetic test showed a predisposition for cancer.  If Angelina Jolie and the Supreme Court together can't concentrate minds on the importance of addressing genetic privacy, I'm not sure what could.