Genetic Privacy

Lecture 1 Privacy: ● Privacy of choice (freedom to make life choices) (agency, gender) ● Physical Privacy (right to be left alone) ● Proprietary Privacy (Use one’s unique qualities fully, not judged at weaknesses) ● Privacy of Information (safeguarding one’s uniquely personal info by preventing collection or disclosure) key with genomics, once it’s out, can’t get back Genetic Privacy: ● Genes give info about medical futures of self and family ● Genetic data can be stored permanently and widely distributed so hard to keep anonymous ● A broad scope of how our genetic info can be used, which questions ethics Personal Genome Service: obtain own genomic DNA without a doctor prescription Direct to Consumer (DTC) advertised during Thanksgiving so can talk about their 23andme DNA results during dinner ● Sets up account and receive kit to fill out health survey and privacy agreement, asked to share your genomic data ● A Saliva kit, sample handling, and genotyping were sent to LabCorp but 23andMe keeps the data. LabCorp has liquid-handling for DNA preparations ● PCR amplification step and transferred to SNP genotyping chip to detect nucleotides at ~900k interest sites ○ Not DNA sequencing, much less whole genomic sequencing (WGS) ○ Taking known sequencing, but still accurate and cheap ○ Obtains SNPS, not genome sequences ○ Risk assessments are estimated from known correlations between DNP genotype, gene, or phenotypes ○ 23andMe uses their data to create new disease risk findings and genotype predictions ○ Shows ancestry, health report, likely for caffeine, sleep FDA warning letter: Medical Field and FDA saw this wasn’t approved or accurate which shut down 23andMe due to having a diagnosis of a disease that can cause unnecessary or harmful treatments or prevention of disease (unhealthy behavior) ● 23andMe made a misleading advertisement that acts like a dr diagnosis which FDA didn’t like. So, they changed their business model to only releasing DNA tests that are 100% accurate with better data for FDA to approve. Which made them the only FDA approved company for this Regulation of Personalized Genome Services: ● Whether should be able to conduct own medical tests on yourself ● Arizona law allows patients to order their genetic tests, should this be allowed? ● Take own blood pressure but can’t order an MRI ● Who interprets the results? (2020) 23andMe warning signs: traditional direct-to-consumer genetics may have more interest with more scientific advancements and genetic understanding ● Market Saturation: DNA market came to a point where most early adopters have already used it ● Privacy: not necessarily just revealing your own DNA, the company sells your data to third parties (Silicon Valley startups and pharmaceutical giants) ○ DNA not governed by companies' dense privacy policies ● Utility: DNA tests aren't necessarily as accurate as hoped, usefulness is limited (2021): Richard Branson: blank-check special-purpose company, VG Acquisition Corp. Merging with 23andMe ● Bought telehealth firm lemonaid (offers patients direct online access to common conditions, from consultation through treatment), free and fast prescription medication delivery ● Pivoting to primary care, integrating genomic data (personalized medicine) so that genetic testing services for entertainment would lead to a much larger business ○ 23andMe is not about selling DNA kits to consumers but trying to be a health care company (but currently a data broker) Ancestry niche to combine DNA and genealogy data for entertainment but the data is powerful