[USA} Final Rule by HHS on Patient Privacy ,and Health Information #general

Jan Meisels Allen

The US Department of Health and Human Services (HHS) published a new final
rule addressing patient privacy and health information. As genealogists we
are interested in family medical history and this pertains to who may
receive information and how it is protected. The new rule may be read at:
It was filed on January 17, 2013 and has "not" been published,
therefore, it is only available in pdf format at this time:
Original url:

It is 563 pages long! Per IAJGS PRAMC Member Ken Ryseky: The rules will be
posted in the 25 January 2013 Federal Register hopefully with a table of
The HHS press release may be read at:

Among items of interest for genealogists:
genetic information is protected under the HIPAA Privacy Rule and prohibits
most health plans >from using or disclosing genetic information for
underwriting purposes.
provides the public with increased protection and control of personal health

The rule becomes effective March 25, 2013 and business providers and
associates and others must be in compliance by September 23, 2013.

The new rule also establishes new limitations on the use and disclosure
of protected health information in certain circumstances. It does addresses
under protected health information when a contractor or other business entity
has a breach of security and the name, social security number and other data
elements of individuals may have been released- and the individual's
identity is effected - this is something that we have been watching in the
Congressional Hearings on Social Security Death Index (SSDI) and the
inappropriate use of Social Security numbers (SSN) by people who have used
deceased as well as living SSN for fraudulent reasons - and the attempt to
close down the SSDI for the public. Although in a review of SSN the new
rule does not appear to address this specific issue (SSDI).

I have not read all 563 pages so if you have questions, please read the rule.

Jan Meisels Allen
IAJGS Vice President
Chairperson, IAJGS Public Records Access Monitoring Committee

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