S4826

An Act concerning health information and certain biotechnology companies, and supplementing Title 26 of the Revised Statutes.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. a. A biotechnology company in possession of a consumer’s health information shall be required to comply with the provisions of the federal “Health Insurance Portability and Accountability Act of 1996,” Pub. L.104-191, all applicable State laws concerning the storage and sale of protected health information, and any regulations adopted pursuant to those federal and State laws.

b. (1) Notwithstanding any law, rule, or regulation to the contrary, a biotechnology company in the possession of a consumer’s individual health information or aggregate de-identified health data shall not be permitted to sell, share, or otherwise disseminate such information or data, individually or in the aggregate, to any other entity.

(2) Any biotechnology company in the possession of such information or data that subsequently merges, is acquired, or declares bankruptcy shall destroy all such information and data in its possession and notify its consumers of such destruction at least 60 days before destroying such information or data. Prior to the destruction of the healthcare information or data, the company shall provide the consumer with an option to download or otherwise retrieve their information or data. In the case of a merger or acquisition, the biotechnology company may request to keep the consumer’s information or data by providing the consumer with a form requesting the continued use and storage of the health information or data. The form must inform the consumer of any changes in the usage of the consumer’s data or health information and an option to have the information or data destroyed.

c. For the purposes of this act:

“Consumer” means an individual who is a resident of the State of New Jersey who provided a genetic sample to a biotechnology company for the purpose of obtaining information related to genetic ancestry or genealogy.

“Biotechnology company” means an entity that provides direct-to-consumer genetic testing for the purpose of providing the consumer with information regarding the consumer’s ancestry and genetic genealogy, including, but not limited to, 23andMe, Ancestry.com, MyHeritage, Gene by Gene, Full Genomes, and Nebula Genomics.

“Health information” or “health data” means the genetic information of the consumer and any other health information as defined in 42 U.S.C. s.1320d.

2. This act shall take effect immediately.

STATEMENT

This bill would require biotechnology companies in the possession of consumer health information to comply with the provisions of the federal “Health Insurance Portability and Accountability Act of 1996” and all applicable State laws concerning the safe storage and sale of protected health information, and any rules or regulations adopted pursuant to those federal and State laws.

This bill would also prohibit biotechnology companies from selling, sharing, or otherwise disseminating the health information, individually or in the aggregate, of a consumer to any other entity. If a biotechnology company subsequently merges, is acquired, or declares bankruptcy, the company would be required to destroy the health information in its possession and notify consumers of the destruction. Prior to destruction, the company shall provide the consumer with an option to download or otherwise retrieve their information or data. In the case of a merger or acquisition, the company could request to keep the consumer’s health information by providing the consumer with a form detailing the request for continued use and storage of the information, the form must also provide the consumer with any details on potential changes in the use of the health information and an option to have the health information destroyed.

For the purposes of this bill:

· “Consumer” means an individual who is a resident of the State of New Jersey who provided a genetic sample to a biotechnology company for the purpose of obtaining information related to genetic ancestry or genealogy.

· “Biotechnology company” means an entity that provides direct-to-consumer genetic testing for the purpose of providing the consumer with information regarding the consumer’s ancestry and genetic genealogy, including, but not limited to, 23andMe, Ancestry.com, MyHeritage, Gene by Gene, Full Genomics, and Nebula Genomics.

· “Health information” or “health data” means the genetic information of the consumer and any other health information as defined in 42 U.S.C. s.1320d.