California Enacts the Genetic Privacy Information Act

This undoubtedly will affect the sharing of DNA information for genealogy and many other purposes.   I suspect that GEDmatch.com will be affected, at least for any activities involving residents of California. The following is an extract from the jdsupra.com website, an online service that provides legal information to the legal community:

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“With the focus of personal privacy increasing, it is unsurprising that additional laws are being proposed to increase privacy rights, including the California Privacy Rights Act initiative on the ballot this upcoming November. More immediately, the California legislature passed, and Governor Newsom signed, the Genetic Information Privacy Act (“GIPA”). GIPA specifically targets biometric information, due to the increase of genetic tracing services, like 23andMe and Ancestry.com. This law pertains to adding more protections to genetic privacy. Many questions arise following the passage of GIPA, such as what businesses are affected? What, if any, penalties or causes of action exist under this new law? How does this law work alongside the CCPA?

“WHAT IS IN THE LAW?

“The law requires notices and actual, express consent from consumers for direct-to-consumer genetic testing companies, and any other company that collects, uses, maintains, or discloses information collected from biometric samples, or from any other element concerning genetic material (i.e. genes). Regarding the express consent provision in particular, this requires that consent is provided for: (1) the use of data through the genetic testing product being provided, for those specific purposes; (2) the storage of the consumer’s biometric sample after testing is complete; (3) each use of the genetic data or sample beyond what was originally intended; (4) each transfer or disclosure to a third party other than service providers, including that third party’s name; and (5) any marketing based on the genetic data. In essence, unless a consumer explicitly opts in, these companies cannot store, use, or market based on the genetic information.”

You can read the full article at https://www.jdsupra.com/legalnews/california-enacts-the-genetic-privacy-82231/.

 

3 Comments

Microarray chips for genetic genealogy address 0.023% of the genome only.
Ancestry’s Illumina OmniExpress Plus chip reports ~53,000 of the SNPs in SNPedia of which ~25,000 of these are in ClinVar. 23andMe’s Illumina chip covers 25544 of the 111009 SNPs in SNPedia of which fewer than 2,000 of these are in ClinVar. FTDNA’s llumina OmniExpress chip covers 14,610 of the SNPs in SNPedia, with ~2,000 of those being known to ClinVar.
All the above chips “provided less comprehensive capture of variation in the druggable genome than the more recently developed arrays with several million SNPs (such as the Illumina Human Omni 2.5 Exome 8 and Illumina Omni 5).”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6321762/
When the sheer cost of drug development is considered combined with statistical GWAS, highly sophisticated pharmaceutical grade biochip platforms must be utilized. Otherwise it’s garbage in and garbage out.
If people don’t understand a chromosome browser, it’s even more likely they misunderstand the scope and limitations of microarray chips used for genetic genealogy when it comes to their scope and limitations for pharmaceutical development.
We should all be concerned there is a widespread hysteria that will culminate in duped consumers who are rendered vulnerable by anyone from employers to insurance agencies to peddlers of purported medical information if some check isn’t put on just how little scientifically relevant medical data genetic genealogy can determine.

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As far as I can tell, GEDmatch had policies in place for quite some time that address the points made the the summary of the legislation.

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