Ricki Lewis

 In the spring of 2018, the capture of the Golden State Killer using a consumer DNA database catapulted the issue of genetic privacy into the headlines. A year later, a second case has pushed genetic privacy to the precipice of a slippery slope as the mothership of DNA databases involved in both cases, GEDmatch, has changed its Terms of Service to give users more control over accessibility of their data to law enforcement.

 

But will increased privacy control slow the momentum in using DNA to catch criminals? The new forensic technology is cracking a case a week now, turning cold cases red hot.

 

The FBI works with genetic genealogists at Parabon NanoLabs, which for many cases uses GEDmatch, which is free. These experts combine DNA information with traditional resources like historical accounts, diaries, and census data to identify individuals.

 

The Utah case

 

This spring's flashpoint centered on use of GEDmatch to break an assault case in Utah. Up until then, the 55 crimes that Parabon Nanolabs had solved using DNA data had all been sexual assault or murder.

 

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

 

I've become a stalker.

 

When I recently stopped at an intersection behind a car with bumper stickers "Make Abortion Criminal Again" and "Worship GOD, not GOV," I followed the offensive vehicle into the parking lot of Target. Out emerged an older white man who took no notice of me approaching, phone camera out.

 

I'm willing to bet that he never had to carry to term, in his body, a fetus known to have a severe chromosomal anomaly.

 

I'd bet that he was never forced to remain pregnant, give birth, and then watch the newborn die.

 

Yet the man in the Target lot, if those bumper stickers were indeed his, feels empowered to take the choice to abort this tragedy from women he doesn't know.

 

But I thank him for the lead-in to this blog post.

 

What's To Become of Prenatal Diagnosis?

 

I'm revising my human genetics textbook for a 13th edition, and I've hit a roadblock at this sentence:

 

"If a test reveals that a fetus has a serious medical condition, the genetic counselor discusses possible outcomes, treatment plans, and the option of ending the pregnancy."

 

I describe those prenatal tests in depth earlier, focusing on how testing fetal DNA in a woman's circulation is replacing the riskier amniocentesis and CVS. But I now have to add "possible" before "option."

 

To continue reading, go to my DNA Science blog at Public Library of Science, where this post first appeared.

On May 21, Abeona Therapeutics announced the go-ahead from the Food and Drug Administration (FDA) for a clinical trial to test a gene therapy for a form of Batten disease called CLN1 disease, aka infantile neuronal ceroid lipofuscinosis. The King family and their organization Taylor's Tale has supported the research that made the clinical trial possible since their beloved Taylor was diagnosed at age 7 in 2006.

 

The eight forms of Batten disease are ultrarare – together they account for only 1 in 100,000 individuals. Each is caused by mutation in a different gene, but all cause neurodegeneration. The conditions were originally named for what was thought to be the typical age of onset, before much was known about the genetics or the natural histories. CLN1 is now recognized to manifest in infancy, late infancy, and in children (juvenile), and Taylor had the juvenile form.

 

CLN1 is the classic "infantile" form. But Taylor King was no longer an infant when she experienced the first subtle sign, a new difficulty with numbers in the first grade. Taylor had taught herself to read at age three.

 

"There were signs of the secret hiding in Taylor's genes even then, but they were too complex and too twisted for any of us to understand," wrote her sister Laura in her book Run to the Light, which I reviewed here.

 

To continue reading, go to my DNA Science blog for Public Library of Science, where this post first appeared.