House Bill Analysis - HB 2485, Innovation, Technology & Economic Development Committee

Summary

A House Bill Analysis from the Washington State House of Representatives Office of Program Research for the Innovation, Technology & Economic Development Committee, on HB 2485, concerning the collection, use, and disclosure of genetic data by direct-to-consumer genetic testing companies. It lists a hearing date of 1/24/20. The brief summary states that the bill prohibits those companies from disclosing a consumer's genetic data to any entity offering health insurance or life insurance, or to any employer of the consumer. It states that a violation is enforceable under the Consumer Protection Act and subject to a civil penalty of up to $2,500 per violation in actions brought by the Attorney General.

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Washington State BILL
House of Representatives
Office of Program Research ANALYSIS
Innovation, Technology & Economic
Development Committee
HB 2485
Brief Description: Concerning the collection, use, and disclosure of genetic data by direct-to-
consumer genetic testing companies.

Sponsors: Representatives Kloba, Slatter, Senn, Lekanoff, Thai, Callan, Valdez, Smith, Davis,
Pollet, Hudgins and Ormsby.

Brief Summary of Bill
Sets forth requirements for direct-to-consumer genetic testing companies with regard
to collection, use, or disclosure of consumers' genetic data.
Prohibits direct-to-consumer genetic testing companies from disclosing a consumer's
genetic data to any entity offering health insurance or life insurance, or to any
employer of the consumer.
Provides that violations are enforceable under the Consumer Protection Act and
subject to civil penalties and statutory damages.

Hearing Date: 1/24/20

Staff: Yelena Baker (786-7301).

Background:

Direct-to-consumer genetic testing companies

Direct-to-consumer genetic testing companies are private companies that market personal genetic
testing to consumers as a method of learning more about consumers' heritage and health. To
obtain a genetic test, a consumer sends a small biological sample (usually saliva) to a genetic
testing company and receives a report based on the company's analysis of the consumer's genetic
material. Typically, no health care provider is involved in this process. A genetic report by
direct-to-consumer genetic testing companies may include information about a consumer's
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This analysis was prepared by non-partisan legislative staff for the use of legislative
members in their deliberations. This analysis is not a part of the legislation nor does it
constitute a statement of legislative intent.

House Bill Analysis -1- HB 2485
ancestry, certain traits, such as taste preferences or aversions, and genetic predisposition to
various diseases.

Regulation related to genetic information

No federal or state law directly regulates direct-to-consumer genetic testing companies.

Federal and state laws protect genetic information as part of an individual's health care
information and prohibit health carriers from establishing rules for eligibility, including
continued eligibility, based on the genetic information of the individual or the individual's
dependent.

Federal law prohibits the use of genetic information to discriminate in employment decisions and
restricts employers from asking for or buying genetic information. Washington state law
prohibits employers from requiring employees or prospective employees to provide genetic
information or submit to screening for genetic information as a condition of employment or
continued employment.

Washington Consumer Protection Act

The Consumer Protection Act (CPA) prohibits unfair methods of competition and unfair or
deceptive practices in the conduct of any trade or commerce. A private person or the Attorney
General may bring a civil action to enforce the provisions of the CPA. A person or entity found
to have violated the CPA is subject to treble damages and attorney's fees.

Summary of Bill:

Specific obligations relating to collection, use, or disclosure of consumers' genetic data are
imposed on direct-to-consumer genetic testing companies.

"Direct-to-consumer genetic testing company" or "company" means an entity that offers
consumer genetic testing products or services directly to consumers without requiring the
involvement of a health care provider.

"Genetic data" means any data, regardless of its format, that concerns a consumer's genetic
characteristics. "Genetic data" does not include de-identified data, which means data that cannot
reasonably be used to infer information about, or otherwise be linked to, an identifiable
consumer, and that is subject to administrative and technical measures to prevent reidentification,
public commitment not to reidentify, and contractual obligations prohibiting reidentification.

A direct-to-consumer genetic testing company must provide clear and complete information
regarding the company's policies and procedures for collection, use, or disclosure of genetic data
and obtain a consumer's consent in order to collect, use, or disclose the consumer's genetic data.
At a minimum, a company must obtain:
initial express consent;
separate express consent for transferring or disclosing genetic data to third parties other
than vendors and service providers;

House Bill Analysis -2- HB 2485
informed consent when genetic data is used, transferred, or disclosed for research
purposes; and
express consent for marketing based on genetic data or a consumer having purchased a
genetic testing product or service.

Valid legal process is required in order to disclose genetic data to law enforcement without a
consumer's express consent.

A direct-to-consumer genetic testing company must implement and maintain a comprehensive
security program to protect genetic data against unauthorized access or use, and to provide a
process for a consumer to:
access the consumer's genetic data;
correct or amend inaccurate genetic data or other personal information;
specify how long the consumer's genetic data and biological sample may be retained by
the company;
delete the consumer's account and genetic data; and
request and obtain the destruction of the consumer's biological sample.

A direct-to-consumer genetic testing company is prohibited from disclosing a consumer's genetic
data to any entity offering health insurance or life insurance, or to any employer of the consumer.

A violation of these provisions is enforceable under the state Consumer Protection Act and
subject to a civil penalty of up to $2,500 per violation in actions brought by the Attorney
General. A consumer may bring a civil action to recover actual damages, but not less than
statutory damages of $2,500 per violation. A court must award costs and reasonable attorney's
fees to a prevailing plaintiff.

Appropriation: None.

Fiscal Note: Available.

Effective Date: The bill takes effect 90 days after adjournment of the session in which the bill is
passed.

House Bill Analysis -3- HB 2485

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