Direct to Consumer
Upon reading the article, I was curious about what are the advantages and disadvantages of DTC (Direct to Consumer) genetic testing and why so many people are using this service.
So I searched Google and came across this link. Source-https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6808639/.I have used this website for helping researchers find relevant information in my last job. This gave me a pretty good glimpse of the shortcomings of DTC genetic testing and why it’s still important to consider doing genetic testing through a clinician.
I also checked out the terms and conditions and privacy statements for two DTC genetic testing companies ancestry and 23andme. I found their privacy terms to be very detailed and elaborate stating each type and category of information collected, the regulatory laws controlling these policies, the types of third parties with whom the information was shared, consent requirements for research and ability to delete accounts as well as remove biological samples.
With the level of disclosure in terms of privacy I would feel safe to share my personal genetic information. However, for more serious health issues I would definitely go to a clinician as their predictive models use a genome wide search and can be much more reliable than DTC testing.
Another topic that caught my interest is The Genetic Information Nondiscrimination Act (GINA). During my interaction with my genetic counselor for my daughter’s autism GINA was bought up and I was anyways curious about it. Hence, I searched for more details on GINA. Source-https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination. I didn’t get any different results than the CR article when searching online either.
This made me wonder what is being done to insure that the gaps that GINA hasis being addressed, since GINA was passed in 2008. So I looked at the proposed law section for the states and came across SB 980 The Genetic Information Privacy Act. If this bill is passed by the California legislature it will become effective in January 2021.Source:-https://openstates.org/ca/bills/20192020/SB980/
While exploring this I also came across Alaska’s Genetic Privacy Act 2004, Florida’s House Bill 1189 – Genetic Information for Insurance purposes and Nevada’s Genetic Information Act 2013.Source:- https://fpf.org/2020/07/24/california-sb-980-would-codify-many-of-fpfs-best-practices-for-consumer-genetic-testing-services-but-key-differences-remain/
These state laws at different levelswill ensure that best practices are followed to protect consumers’ privacy and especially the Florida House Bill that bars life, disability and long term care from discrimination against consumers based on Genetic testing Results. Other states should also follow and have these policies in place.
