Genetic privacy

NEW YORK, July 13, 2023 /PRNewswire/ -- Wolters Kluwer Legal & Regulatory U.S. will showcase a diverse portfolio of new and recently enhanced solutions for legal professionals at the 2023 American Association of Law Libraries (AALL) Annual Meeting and Conference, taking place in Boston, MA from July 15-18. Ken Crutchfield, Vice President & General Manager of Legal Markets for Wolters Kluwer Legal & Regulatory U.S., will moderate a panel titled "Exploring the Opportunities and Risks of ChatGPT in the Legal Industry" during the conference.

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In July 2018, the Future of Privacy Forum released Privacy Best Practices for Consumer Genetic Testing Services. FPF developed the Best Practices following consultation with technical experts, regulators, leading consumer genetic and personal genomic testing companies, and civil society. The FPF Best Practices include strict standards for the use and sharing of genetic information generated in the consumer context. Companies that pledged to follow the guidelines, including Ancestry, 23andMe, and Helix promised to: provide safeguards for how genetic information is collected, used, shared, and retained;implement consent requirements for the initial collection and certain subsequent disclosures of genetic information; guarantee consumer rights to access, correction, and deletion; ban sharing genetic information absent consent or legal process; andimplement strong data security protections and privacy by design principles.Below, we analyze SB 980’s approach to: (1) consent; (2) marketing; (3) privacy policies; (4) research; and (5) penalties and enforcement. We also examine (6) several other federal and state laws that currently regulate genetic privacy.  Consent for Genetic Data //FPF’s Best Practices define express consent as a consumer’s statement or clear affirmative action in response to a clear, meaningful, and prominent notice, while encouraging companies to use flexible consent mechanisms that are effective within the context of the service, in-app or in-browser experience, and relationship between the company and individual.  Marketing //Like FPF’s Best Practices, SB 980 also requires companies to obtain opt-in consent before marketing based on a consumer’s genetic data. A recent amendment would align SB 980’s and FPF’s approaches to marketing based on purchase history, requiring provision of an opt-out. However, a related SB 980 amendment would require companies to provide users with mechanisms to opt out of contextual advertising. This approach would be inconsistent with most leading norms, including HIPAA and the California Privacy Rights Act. This is because, in contrast to targeted or behavioral advertising, contextual advertising is not typically viewed as implicating significant privacy risks. Indeed, privacy advocates have cited contextual advertising as a privacy-protective model that displays marketing messages on web pages based on the content of the page, not information about an individual.  Privacy Policies // Similarly, SB 980 would require all direct-to-consumer genetic or illness testing services companies to provide consumers with “clear and complete information regarding the company’s policies and procedures for the collection, use, and disclosure, of genetic data” through “a summary of its privacy practices, written in plain language” and “a prominent and easily accessible privacy notice.”   Research //SB 980 also requires informed consent before using data for research, “in compliance with the federal policy for the protection of human research subjects” — effectively the same standard as the FPF Best Practices. Similarly, SB 980 also promotes strong deidentification of data, meaning data that “cannot be used to infer information about, or otherwise be linked to, a particular identifiable individual,” provided it is also subject to public commitments and contractual obligations to not make attempts to reidentify the data. Penalties and Enforcement //SB 980 includes a tiered penalty structure, with negligent violations of the act subject to civil penalties not to exceed one thousand dollars ($1,000) and willful violations between $1,000 and $10,000 plus court costs. Penalties for wilful violations would be paid to the individual to whom the genetic information pertains. Penalties could add up quickly – they are calculated on a per violation, per consumer basis. Earlier versions of SB 980 included criminal penalties; the bill sponsors recently removed criminal liability in favor of a higher civil penalty, raising the maximum fine from $5,000 to $10,000.  Other Federal and State Laws //Key state laws governing genetic information include:Alaska’s Genetic Privacy Act (2004) which regulates access, retention, and disclosure of genetic information without the “informed and written consent” of the consumer; recognizes that both the genetic information and the DNA samples collected are the property of the consumer; and provides for both civil and criminal penalties for violations of genetic privacy rights. Alaska’s law does not require valid legal process (such as a court order) for law enforcement access to genetic information. Florida’s House Bill 1189, Genetic Information for Insurance Purposes (passed and awaiting the Governor’s approval as of March 2020), would bar life, disability and long-term care insurance companies from using consumer genetic test results for coverage purposes. Nevada’s comprehensive Genetic Information Act (2013) prohibits the collection, retention, or disclosure of genetic information without prior consent from the individual; requires law enforcement to obtain a court order prior to accessing genetic information; provides consumers the right to inspect and obtain genetic records; requires entities holding genetic information to destroy that information if consent is withdrawn; and provides criminal penalties and a private right of action for violations of the law.SB 980 would establish obligations for direct-to-consumer genetic testing companies and others that collect or process genetic information.