Ricki Lewis

A woman lingers at a display of coffeemakers. Soon after, images of the very same contraptions festoon her Facebook feed, courtesy of her phone's GPS and store cameras.

 

A man diagnosed with a blood clot gets TV ads for a drug to prevent further episodes.

 

A person peruses ads for indoor herb gardens for a gift and is later bombarded with botanical options on social media.

 

People turn 65, and suddenly Joe Namath interrupts their favorite TV shows, with unending descriptions of Medicare Supplement plans.

 

Coincidences? Hardly. In this age of TMI, it can feel as if our very brains are being intrusively picked, constantly.

Even our DNA can be trolled for embedded preferences and habits, if we (sometimes unknowingly) provide permission.

 

How foreboding is the 'privacy crisis'?
Remi Daviet, Gideon Nave, and Jerry Wind, from the Wharton School of the University of Pennsylvania, dissect "Genetic Data: Potential Uses and Misuses in Marketing," in a report in a special issue of the Journal of Marketing.

 

To continue reading, go to Genetic Literacy Project, where this post first appeared.

A team of biologists, policy analysts, and legal experts from the University of Queensland call for a new Genetic Data Protection Act in an article just published in Genetics in Medicine.

A new law is needed now, the researchers argue, because of the increasing difficulty of keeping the threads of DNA use separate. “What happens to our genetic data in one realm, such as forensics, is highly likely to affect how society trusts the use of genetic data in medicine. The speed of these developments has surprised many and demands a policy response to protect trust in medical genetics,” they write.

A data protection act is a great idea, but isn’t it a little late? The collision between genetic privacy and the consumer testing data dump that forensics is tapping into is already here. And it may detonate when the millions of DNA kits sitting under Christmas trees right now are translated into information. Read More 

A bill that passed last week in the House threatens genetic privacy protections put in place with the Genetic Information Nondiscrimination Act (GINA) of 2008. The “Preserving Employee Wellness Programs Act” might instead be called the “telling on relatives” ruling.

GINA

According to GINA, employers can’t use genetic information to hire, fire, or promote an employee, or require genetic testing, and health insurers can’t require genetic tests nor use results to deny coverage. The law clearly defines genetic tests – DNA, RNA, chromosomes, proteins, metabolites – and genetic information –genetic test results and family history of a genetic condition.

GINA refers to a case, Norman-Bloodsaw v. Lawrence Berkeley Lab from 1998, that allowed clerical and administrative workers to sue their employer for requiring testing for “highly private and sensitive medical genetic information such as syphilis, sickle cell trait, and pregnancy” without their consent or knowledge during a general employee health exam. I’m not sure how syphilis and pregnancy got lumped in with sickle cell trait (a carrier), but requiring any such test is considered an illegal search under the Fourth Amendment. The sickle cell request also violates Title VII of the Civil Rights Act by singling out employees of African ancestry. Read More