,i  #aafth ,,congress  #ast ,session    
,h4 ,r4 #baee  ,,in ,,the ,,house ,,of  
,,representatives  ,april #i1 #bjai,mr4 
,rush introduced the following bill2    
which was referred to the ,committee on 
,energy and ,commerce  ,a ,,bill  ,to   
provide for certain requirements with   
respect to the treatment of personally  
identifiable information by genetic     
testing services4  #a4 ,short title     
,this ,act may be cited as the ,genetic 
,information ,privacy ,act of #bjai4    
#b4 ,treatment of personally            
identifiable information by genetic     
testing services  7a7 ,consent required 
7#a7 ,express consent for disclosure    
7,a7 ,in general ,a genetic testing     
service may not disclose personally     
identifiable information of a customer  
to a third party unless the service     
obtains the express consent of the      
customer4  7,b7 ,relationship to        
informed consent requirement ,in the    
case of the disclosure of genetic       
information for medical research1       

paragraph 7#b7 applies instead of       
subparagraph 7,a74  7#b7 ,informed      
consent for use or disclosure of genetic
 information for medical research ,a    
genetic testing service may not use     
genetic information of a customer for   
medical research1 or disclose such      
information to a third party for medical
 research1 unless the service--  7,a7   
obtains the informed consent of the     
customer in accordance with section     
#df4aaf of title #de1 ,code of ,federal 
,regulations1 as in effect on the date  
of the enactment of this ,act2 and  7,b7
 documents the consent of the customer  
in accordance with section #df4aag of   
title #de1 ,code of ,federal            
,regulations1 as in effect on the date  
of the enactment of this ,act4  7#c7    
,option regarding genetic information   
,in seeking the consent of a customer   
under paragraph 7#a7 or 7#b7 for the    
disclosure of personally identifiable   
information1 a genetic testing service  
shall give the customer the option of   

providing consent for the disclosure of 
the genetic information of the customer 
while withholding consent for the       
disclosure of any other personally      
identifiable information of the         
customer4  7#d7 ,prohibition on         
conditioning service on consent ,a      
genetic testing service may not         
condition the provision of service to a 
customer on obtaining the consent of the
 customer required by paragraph 7#a7 or 
7#b71 except to the extent that         
disclosure of personally identifiable   
information is necessary to provide the 
service4  7b7 ,notification  7#a7 ,new  
customers ,in the case of an agreement  
for service entered into between a      
genetic testing service and a customer  
on or after the effective date described
 in section #f1 the genetic testing     
service shall notify the customer of the
 rights of the customer under subsection
 7a7--  7,a7 at the time when the       
agreement is entered into2  7,b7 using  
the same method of communication by     

which the agreement is entered into2 and
  7,c7 in a manner that is-- 7i7 clear  
and conspicuous2 and  7ii7 separate from
 any privacy policy1 data use policy1 or
 other similar document4  7#b7 ,existing
 customers  7,a7 ,in general ,in the    
case of an agreement for service entered
 into between a genetic testing service 
and a customer before the effective date
 described in section #f1 the genetic   
testing service shall notify the        
customer of the rights of the customer  
under subsection 7a7--  7i7 not later   
than the date that is #a year after such
 effective date2  7ii7 using the primary
 method of communication of the genetic 
testing service with the customer2 and  
7iii7 in a manner that is-- 7,i7 clear  
and conspicuous2 and  7,,ii7 separate   
from any privacy policy1 data use       
policy1 or other similar document4  7,b7
 ,inability to contact ,a genetic       
testing service may not be considered to
 be in violation of subparagraph 7,a7 by
 reason of being unable to contact a    

customer1 if the service sends the      
notification required by such           
subparagraph--  7i7 if the primary      
method of communication of the service  
with the customer is in writing1 to the 
last known home mailing address of the  
customer in the records of the service2 
and  7ii7 if the primary method of      
communication of the service with the   
customer is email or other electronic   
means1 to the last known email address1 
or using the last known other electronic
 contact information1 as the case may   
be1 of the customer in the records of   
the service4  7#c7 ,website notification
 ,in addition to the notifications      
required by paragraphs 7#a7 and 7#b71 a 
genetic testing service shall provide   
clear and conspicuous notification of   
the rights of customers under subsection
 7a7 on the internet website of the     
service 7if the service maintains such a
 website74 ,such notification shall be  
separate from any privacy policy1 data  
use policy1 or other similar document4  

7#d7 ,contents ,the ,commission shall   
include in the regulations promulgated  
under subsection 7d7 requirements for   
the contents of the notifications       
required by this subsection4  7c7       
,information security requirements ,the 
,commission shall promulgate regulations
 that require a genetic testing service 
to implement policies and procedures to 
secure the personally identifiable      
information of customers of the service 
against unauthorized access4  7d7       
,regulations  7#a7 ,in general ,not     
later than #a year after the date of the
 enactment of this ,act1 the ,commission
 shall promulgate1 under section #eec of
 title #e1 ,united ,states ,code--  7,a7
 regulations to implement subsections   
7a7 and 7b72 and  7,b7 the regulations  
required by subsection 7c74  7#b7       
,considerations ,in promulgating        
regulations under paragraph 7#a71 the   
,commission shall take into             
consideration-- 7,a7 the size of1 and   
the nature1 scope1 and complexity of the

 activities engaged in by1 different    
types or categories of genetic testing  
services2  7,b7 the cost of implementing
 the requirements of subsections 7a7 and
 7b7 and such regulations2 and  7,c7 in 
the case of the regulations required by 
subsection 7c71 the current state of the
 art in administrative1 technical1 and  
physical safeguards to secure           
information against unauthorized access4
  #c4 ,enforcement  7a7 ,enforcement by 
,federal ,trade ,commission  7#a7       
,unfair or deceptive acts or practices  
,a violation of section #b or a         
regulation promulgated under such       
section shall be treated as an unfair or
 deceptive act or practice in violation 
of a regulation under section           
#ah7;a77#a77;,b7 of the ,federal ,trade 
,commission ,act 7#ae ,u4,s4,c4         
#eg;a7a77#a77;,b77 regarding unfair or  
deceptive acts or practices4  7#b7      
,powers of ,commission ,the ,commission 
shall enforce section #b and the        
regulations promulgated under such      

section in the same manner1 by the same 
means1 and with the same jurisdiction1  
powers1 and duties as though all        
applicable terms and provisions of the  
,federal ,trade ,commission ,act 7#ae   
,u4,s4,c4 #da et seq47 were incorporated
 into and made a part of this ,act4 ,any
 person who violates such section or    
such a regulation shall be subject to   
the penalties and entitled to the       
privileges and immunities provided in   
the ,federal ,trade ,commission ,act4   
7b7 ,enforcement by ,state attorneys    
general  7#a7 ,civil action ,in any case
 in which the attorney general of a     
,state1 or an official or agency of a   
,state1 has reason to believe that an   
interest of the residents of that ,state
 has been or is threatened or adversely 
affected by any person who violates     
section #b or a regulation promulgated  
under such section1 the attorney        
general1 official1 or agency of the     
,state1 as parens patriae1 may bring a  
civil action on behalf of the residents 

of the ,state in a district court of the
 ,united ,states of appropriate         
jurisdiction--  7,a7 to enjoin further  
violation of such section or such       
regulation by the defendant2  7,b7 to   
compel compliance with such section or  
such regulation2 or  7,c7 to obtain     
civil penalties in the same amount as   
the civil penalties that may be obtained
 by the ,commission under section #e7m7 
of the ,federal ,trade ,commission ,act 
7#ae ,u4,s4,c4 #de7m774  7#b7           
,intervention by ,,ftc  7,a7 ,notice and
 intervention ,the ,state shall provide 
prior written notice of any action under
 paragraph 7#a7 to the ,commission and  
provide the ,commission with a copy of  
its complaint1 except in any case in    
which such prior notice is not feasible1
 in which case the ,state shall serve   
such notice immediately upon instituting
 such action4 ,the ,commission shall    
have the right--  7i7 to intervene in   
the action2  7ii7 upon so intervening1  
to be heard on all matters arising      

therein2 and  7iii7 to file petitions   
for appeal4  7,b7 ,limitation on state  
action while ,federal action is pending 
,if the ,commission has instituted a    
civil action for violation of section #b
 or a regulation promulgated under such 
section1 no ,state attorney general1 or 
official or agency of a ,state1 may     
bring an action under paragraph 7#a7    
during the pendency of the action of the
 ,commission against any defendant named
 in the complaint of the ,commission for
 any violation of such section or such  
regulation alleged in the complaint4    
7#c7 ,rule of construction ,for purposes
 of bringing any civil action under     
paragraph 7#a71 nothing in this ,act or 
the regulations promulgated under this  
,act shall be construed to prevent an   
attorney general of a ,state from       
exercising the powers conferred on the  
attorney general by the laws of that    
,state to--  7,a7 conduct               
investigations2  7,b7 administer oaths  
or affirmations2 or  7,c7 compel the    

attendance of witnesses or the          
production of documentary and other     
evidence4  #d4 ,effect on other laws    
7a7 ,preemption of certain ,state laws  
relating to genetic testing ,this ,act  
and the regulations promulgated under   
this ,act supersede any provision of a  
statute1 regulation1 or rule of a ,state
 or political subdivision of a ,state1  
with respect to an entity to the extent 
this ,act and the regulations           
promulgated under this ,act apply to    
such entity1 that expressly provides for
 requirements relating to treatment of  
personal information by services        
providing genetic testing that are      
similar to any requirements contained in
 section #b or a regulation promulgated 
under such section4  7b7 ,preservation  
of certain ,state laws ,this ,act and   
the regulations promulgated under this  
,act may not be construed to preempt the
 applicability of--  7#a7 ,state        
trespass1 contract1 or tort law2 or     
7#b7 other ,state laws to the extent    

that those laws relate to acts of fraud4
  7c7 ,additional preemption  7#a7 ,in  
general ,no person other than the       
attorney general of a ,state1 or another
 official or agency of a ,state1 may    
bring a civil action under the laws of  
any ,state if such action is premised in
 whole or in part upon the defendant    
violating any provision of this ,act or 
a regulation promulgated under this     
,act4  7#b7 ,preservation of consumer   
protection laws ,this subsection may not
 be construed to limit the enforcement  
of any ,state consumer protection law by
 an attorney general of a ,state1 or    
another official or agency of a ,state4 
7d7 ,preservation of ,,ftc authority    
,nothing in this ,act may be construed  
in any way to limit the authority of the
 ,commission under any other provision  
of law4  #e4 ,definitions ,in this ,act3
 7#a7 ,commission ,the term ,commission 
means the ,federal ,trade ,commission4  
7#b7 ,genetic information ,the term     
genetic information-- 7,a7 has the      

meaning given such term in section #bja 
of the ,genetic ,information            
,nondiscrimination ,act of #bjjh 7#db   
,u4,s4,c4 #bjjj;ff72 and  7,b7 includes 
a physical sample1 such as fluid or     
tissue1 obtained from a customer for    
purposes of performing a genetic test4  
7#c7 ,genetic test ,the term genetic    
test has the meaning given such term in 
section #bja of the ,genetic            
,information ,nondiscrimination ,act of 
#bjjh 7#db ,u4,s4,c4 #bjjj;ff74  7#d7   
,genetic testing service ,the term      
genetic testing service means any entity
 that-- 7,a7 offers genetic tests       
directly to consumers2 or  7,b7 analyzes
 genetic information obtained from a    
genetic test offered directly to        
consumers1 except to the extent that the
 analysis is performed by a medical     
professional for diagnosis or treatment 
of a medical condition4  7#e7 ,medical  
research ,the term medical research     
means the conduct of investigations1    
experiments1 and studies to discover1   

develop1 or verify knowledge relating to
 the causes1 diagnosis1 treatment1      
prevention1 or control of physical or   
mental diseases and impairments of      
humans4  7#f7 ,personally identifiable  
information  7,a7 ,definition ,the term 
personally identifiable information     
means any of the following of an        
individual3 7i7 ,name4  7ii7 ,address4  
7iii7 ,social ,security number4  7iv7   
,phone number4  7v7 ,online identifier1 
such as an email address or user ,,id4  
7vi7 ,genetic information4  7vii7       
,information1 other than genetic        
information1 that--  7,i7 relates to the
 past1 present1 or future physical or   
mental health or condition of the       
individual2 and  7,,ii7 either-- 7aa7   
identifies the individual2 or  7bb7     
there is a reasonable basis to believe  
can be used to identify the individual4 
7,b7 ,modified definition by rulemaking 
,the ,commission may1 by regulation     
promulgated under section #eec of title 
#e1 ,united ,states ,code1 modify the   

definition of personally identifiable   
information under subparagraph 7,a7 to  
the extent that such modification is    
necessary to accommodate changes in     
technology or practices1 will not       
unreasonably impede interstate commerce1
 and will accomplish the purposes of    
this ,act4  7#g7 ,state ,the term ,state
 means each ,state of the ,united       
,states1 the ,district of ,columbia1    
each commonwealth1 territory1 or        
possession of the ,united ,states1 and  
each federally recognized ,indian       
,tribe4  7#h7 ,third party ,the term    
third party means1 with respect to a    
genetic testing service1 an entity      
7including an entity that controls1 is  
controlled by1 or is under common       
control with the service7 that holds    
itself out to the public as separate    
from the service such that a customer of
 the service acting reasonably under the
 circumstances would not expect the     
entity to be related to the service or  
to have access to personally            

identifiable information that the       
customer provides to the service4  #f4  
,effective date ,except for subsections 
7c7 and 7d7 of section #b1 section      
#e7f77;,b71 this section1 and section   
#g1 this ,act and the regulations       
required by subsections 7c7 and 7d7 of  
section #b shall apply beginning on the 
date that is #cj days after the date on 
which the ,commission promulgates such  
regulations4  #g4 ,authorization of     
appropriations ,there is authorized to  
be appropriated to the ,commission      
#e1jjj1jjj for each of the fiscal years 
#bjbj through #bjbi to carry out this   
,act4