,,ii #aahth ,,congress #b;d ,session ,s4 #edcc ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,december #e1 #bjbd,mr4 ,cassidy 7for himself and ,mr4 ,peters7 introduced the following bill2 which was read twice and referred to the ,committee on ,commerce1 ,science1 and ,transportation ,a ,,bill ,to provide consumers with the right to delete their genomic data1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,genomic ,data ,protection ,act4 #b4 ,consumer rights regarding genomic data 7a7 ,requirements 7#a7 ,consumer controls ,a direct-to-consumer genomic testing company shall develop procedures and provide an effective mechanism 7including an option that is through the primary medium by which the company communicates with the consumer7 to allow a consumer to-- 7,a7 access the genomic data of the consumer2 and 7,b7 subject to paragraph 7#d7-- 7i7 delete the account of the consumer1 including any genomic data associated with such account2 and 7ii7 request the destruction of any biological sample of the consumer4 7#b7 ,notification 7,a7 ,consumer controls and use of deidentified genomic data ,a direct-to-consumer genomic testing company shall make available1 in a clear and conspicuous1 not misleading1 and easy-to-read manner a notice that-- 7i7 provides a detailed and accurate representation of the rights set forth in subparagraphs 7,a7 and 7,b7 of paragraph 7#a72 and 7ii7 discloses that the deidentified genomic data of a consumer may be shared or disclosed to conduct medical or scientific research1 consistent with the privacy regulations promulgated under section #bfd7;c7 of the ,health ,insurance ,portability and ,accountability ,act of #aiif 7#db ,u4,s4,c4 #acbj;d-#b note74 7,b7 ,purchase of company or genomic data ,in the event that a direct-to-consumer genomic testing company 7or the genomic data of such company7 is purchased or otherwise acquired by another entity1 the direct-to-consumer genomic testing company shall send to each consumer1 not fewer than #cj days prior to the date on which the purchase or acquisition is complete1 a notice that includes-- 7i7 the identity of the entity purchasing or otherwise acquiring the company2 and 7ii7 a detailed and accurate representation of the rights set forth in subparagraphs 7,a7 and 7,b7 of paragraph 7#a74 7#c7 ,processing of deletion or destruction requests ,with respect to a consumer's request to delete the genomic data or to destroy the biological sample of the consumer1 a direct-to-consumer genomic testing company shall-- 7,a7 fulfill such request not later than #cj days after the date on which the consumer makes such request2 and 7,b7 notify the consumer of such deletion or destruction not later than #cj days after the deletion or destruction4 7#d7 ,exceptions ,a direct-to-consumer genomic testing company shall not permit a consumer to exercise a right described in paragraph 7#a77;,b7 if the company determines that the exercise of the right would require the deletion of information-- 7,a7 subject to a warrant1 lawfully executed subpoena1 or other court order2 or 7,b7 the company is required to retain in order to comply with any other applicable legal or regulatory requirement4 7b7 ,enforcement 7#a7 ,unfair or deceptive acts or practices ,a violation of this section or a regulation promulgated thereunder shall be treated as a violation of a rule defining an unfair or deceptive act or practice under section #ah7;a77#a77;,b7 of the ,federal ,trade ,commission ,act 7#ae ,u4,s4,c4 #eg;a7a77#a77;,b774 7#b7 ,powers of the ,commission 7,a7 ,in general ,the ,commission shall enforce this 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 section4 7,b7 ,privileges and immunities ,any person who violates this section or a regulation promulgated thereunder shall be subject to the penalties and entitled to the privileges and immunities provided in the ,federal ,trade ,commission ,act 7#ae ,u4,s4,c4 #da et seq474 7,c7 ,authority preserved ,nothing in this section shall be construed to limit the authority of the ,commission under any other provision of law4 7,d7 ,rulemaking ,not later than #a year after the date of enactment of this section1 the ,commission shall promulgate in accordance with section #eec of title #e1 ,united ,states ,code1 such rules as may be necessary to carry out this section4 7c7 ,definitions ,in this section3 7#a7 ,biological sample ,the term biological sample means any material part of the human1 discharge therefrom1 or derivative thereof1 such as tissue1 blood1 urine1 or saliva1 known to contain deoxyribonucleic acid 7,,dna74 7#b7 ,commission ,the term ,commission means the ,federal ,trade ,commission4 7#c7 ,consumer ,the term consumer means an individual that obtains a genomic testing product or service from a direct-to-consumer genomic testing company4 7#d7 ,direct-to-consumer genomic testing company 7,a7 ,in general ,the term direct-to-consumer genomic testing company means a person that does any of the following3 7i7 ,sells1 markets1 interprets1 analyzes1 or otherwise offers genomic testing products or services directly to consumers4 7ii7 ,analyzes genomic data obtained from a consumer4 7iii7 ,collects1 uses1 maintains1 or discloses genomic data collected or derived from a direct-to-consumer genomic testing product or service4 7iv7 ,purchases or acquires genomic data from a direct-to-consumer genomic testing company4 7,b7 ,exclusion for health care professionals ,the term direct-to-consumer genomic testing company shall not include a health care professional 7as defined in section #bbe of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bcd77 that performs an action described in subparagraph 7,a7 for purposes of diagnosis or treatment of a medical condition4 7#e7 ,genomic data 7,a7 ,in general ,the term genomic data-- 7i7 means any data1 regardless of its format or whether the data has been deidentified1 that results from the analysis of a biological sample from a consumer and concerns genomic material2 and 7ii7 includes-- 7,i7 deoxyribonucleic acids 7,,dna71 ribonucleic acids 7,,rna71 genes1 chromosomes1 alleles1 genomes1 alterations or modifications to ,,dna or ,,rna1 and single nucleotide polymorphisms 7,s,n,ps72 7,,ii7 uninterpreted data that results from the analysis of the biological sample2 or 7,,iii7 any information extrapolated1 derived1 or inferred therefrom4 7,b7 ,exclusion of deidentified genomic data ,the term genomic data shall not include the deidentified genomic data of a consumer to the extent that such data is used to conduct medical or scientific research1 consistent with the privacy regulations promulgated under section #bfd7;c7 of the ,health ,insurance ,portability and ,accountability ,act of #aiif 7#db ,u4,s4,c4 #acbj;d-#b note74 7#f7 ,genomic testing product or service ,the term genomic testing product or service means any testing product or service that analyzes or otherwise uses the genomic data or biological sample of a consumer4 7d7 ,relationship to ,federal and ,state laws 7#a7 ,federal law preservation ,nothing in this ,act1 or a regulation promulgated under this ,act1 shall be construed to limit any other provision of ,federal law1 except as specifically provided in this ,act4 7#b7 ,state law preservation ,nothing in this ,act1 or a regulation promulgated under this ,act1 shall be construed to preempt1 displace1 or supplant any ,state law1 except to the extent that a provision of ,state law conflicts with a provision of this ,act1 or a regulation promulgated under this ,act1 and then only to the extent of the conflict4