Genetic Testing Company Myriad Accused Of Withholding Data From Patients
A complaint filed on behalf of four patients alleges that the company is not providing the patients with access to their full test results. Myriad says that genetic information is not covered by HIPAA rules. Meanwhile, scientists are closer to identifying genes that could lead to "designer babies."
Patients Challenge Myriad Genetics For Access To Their Gene Data
Genetic testing company Myriad Genetics, the defendant in a landmark Supreme Court case over gene patents, is back in the spotlight — this time, for withholding genetic data from patients. Myriad held patents on the BRCA1 and BRCA2 genes until 2013, and tested more than 1 million patients for variations in those genes that might increase a person’s risk of breast, ovarian, prostate, and other cancers. Though Myriad no longer holds the patents on those genes, it still holds patients’ data, and has been resistant to sharing it with researchers or public databases. (Samuel, 5/19)
The Washington Post:
Scientists Discover Five Genes That Impact Nose Shape. Will Designer Babies Be Far Behind?
In the futuristic movie “Gattaca,” those in the ruling class are genetically engineered to be a physically perfect version of their parents. They are as thin and tall as models, with perfect cheekbones, square jaws and thick, glossy hair. Think of stars Uma Thurman and Jude Law. When the movie came out in 1997, this idea of “designer babies” was still far-fetched. DNA analysis was still in its early stages and the world was still years away from sequencing the first human genome, much less a particular gene’s function. But in the more than 20 years that have passed, our understanding of our own DNA and how it works has exploded, and scientists have discovered a great number of genes that control our physical appearance. (Cha, 5/19)