Death and Privacy Part I

by Bob Gellman March 29th, 2013 2:02 pm

Do Dead People Have Privacy Rights?

Part 1 of 2

 Traditional privacy policy, if there is such a thing, says that privacy is an attribute of living individuals.  Therefore, dead people have no privacy rights.  It’s a clear and simple line, easy to apply.  It probably makes researchers, genealogists, biographers, and some others happy.

Life and death are not that simple.  The federal health privacy rules known as HIPAA originally provided that health records must be protected for privacy forever.  I was fond of saying that your health records were protected until the sun runs out of hydrogen.  However, that rule – another simple to apply, bright line – created some issues.

Who is the heir of George Washington?  Now that’s definitely a question that genealogists can help to answer.  I suspect that the answer will be complicated in many cases, especially over decades and centuries.  There may be no heir.  There may be dozens of heirs of equal status.  How are we going to decide if George’s health records can be shared with a historian, health researcher, or newspaper reporter?  Do we take a vote among all the heirs?  Do the votes of those who are more directly descended receive a greater weight?  How do we even find the heirs?  Should we allow heirs to sell the information?

So the privacy forever rule seems hard to apply.  Let’s stick with health records, but try it the other way.  Let’s say that privacy ends at death.

The immediate family of the dead individual might not be happy.  A death is hard enough, but the prospect that the deceased health records would become public could create even more difficulties.  For many individuals, few people outside the immediate family would care much about the details.  However, for celebrities, there would be many demands for records.  What do you think tabloids would do if they could get their hands on ___________’s health records?  You can fill in the blank yourself, but some obvious candidates are Michael Jackson, Vince Foster, and Ronald Reagan.

While you’re thinking about that, you need to know that an x-ray of Marilyn Monroe recently sold at auction for $45,000.  See http://www.nydailynews.com/news/money/marilyn-monroe-chest-x-ray-1954-sells-45-000-las-vegas-auction-article-1.184979.  Do we want hospitals and labs selling celebrity test results and blood or tissue samples immediately upon death?  That’s more than a bit ghoulish for me.

Even for ordinary people, families might be traumatized if records showed that the deceased died of alcoholism, drug abuse, AIDS, syphilis, suicide, or other particularly unpleasant, reputation-destroying, or communicable disease.  Would a privacy-end-at-death rule mean that the DNA of the deceased could become public?  DNA information clearly tells something about direct descendants, and many might be unhappy that part of their genetic heritage would be public.

While I was working on this post, the story about the sequencing of Henrietta Lack’s DNA hit the press.  She was the woman whose cancer cells have been used worldwide for decades without her consent or the consent of her family.  Rebecca Skloot – who wrote the book The Immortal Life of Henrietta Lacks – wrote a NYT op-ed about the latest development.  http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html.

In February of this year, HHS changed the HIPAA rule.  HHS replaced its privacy forever rule with a 50-year rule.  Any term of years is necessarily arbitrary, and 50 seem long enough so that nervous bureaucrats aren’t likely to be criticized by grieving families any time soon.

Is 50 years too long?  Probably, if you have an interest in genealogy.  And it could be longer as a matter of practice.  The preamble to the HIPAA rule notes that if a State has a law that provides for additional privacy protection, that law remains in force.  So the actual answer could vary state by state.  That could be particularly messy if, as is common today, an individual has health records in more than one state.  Further, HHS pointed out that the professional responsibilities of health care providers may require that patient records receive longer protections.  How long does a psychiatrist keep records confidential?  I don’t know if the profession has a policy.  It’s a messy legal issue whether and when a physician-patient or psychotherapist-patient evidentiary privilege survives the patient’s death.

We’ve just gotten started with dead people and privacy so maybe it’s time to end and come back another day with more.  I will end with a few new thoughts.  Even if privacy lasts forever, that doesn’t mean that everything is private forever.  It seems harder to argue that the fact of a death should be private.  No man is an island, right?  There are legal and other reasons for telling the world that someone is dead.  What else can we say about the deceased?  It’s easier to say that the name and date of death should be public.  There’s more to debate about whether next-of-kin, cause of death, and similar information should be public as well.

I’m not taking a stand, other than to emphasize that there’s a lot of room between nothing disclosed and everything disclosed immediately.   More in another post.


One Response to “Death and Privacy Part I”

  1. avatar Northbound says:

    Found your website via GeneaBloggers. I'm delighted to find discussions about privacy and similar matters within the genealogy community. I'll be following your blog closely. Thanks!

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