Myriad Updates: Clinical Data as Trade Secrets and a Pending Certiorari Decision
By Dan Vorhaus,
Genomics Law Report
| 11. 28. 2012
Earlier this month, my colleagues John Conley, Robert Cook-Deegan, James Evans and I published a policy article in the
European Journal of Human Genetics (EJHG) entitled “
The next controversy in genetic testing: clinical data as trade secrets.”
The EJHG article is open access so you can read the
entire article at the EJHG website, but here is the abstract:
Sole-source business models for genetic testing can create private databases containing information vital to interpreting the clinical significance of human genetic variations. But incomplete access to those databases threatens to impede the clinical interpretation of genomic medicine. National health systems and insurers, regulators, researchers, providers and patients all have a strong interest in ensuring broad access to information about the clinical significance of variants discovered through genetic testing. They can create incentives for sharing data and interpretive algorithms in several ways, including: promoting voluntary sharing; requiring laboratories to share as a condition of payment for or regulatory approval of laboratory services; establishing – and compelling participation in – resources that capture the information needed to interpret the data...
Related Articles
By Megan Agnew, The Times | 09.15.2024
Faith Hartley always wanted two girls — a blonde and a redhead. “I thought, I’ll have one that looks like me,” says Hartley, 35, smoothing her golden hair in the Los Angeles valley home she shares with her husband, Neil...
By Emily R. Klancher Merchant, Los Angeles Review of Books | 08.22.2024
IN THE Operation Varsity Blues scandal of 2019, 50 wealthy parents were charged with trying to get their children into elite universities through fraudulent means. The story dramatically demonstrated the lengths to which some parents will go to ensure their...
By Julia Brown, The Conversation | 08.16.2024
With their primary goal to advance scientific knowledge, most scientists are not trained or incentivized to think through the societal implications of the technologies they are developing. Even in genomic medicine, which is geared toward benefiting future patients, time and...
By Smriti Mallapaty, Nature | 09.11.2024
Under his microscope, Jun Wu could see several tiny spheres, each less than 1 millimetre wide. They looked just like human embryos: a dark cluster of cells surrounded by a cavity, and then another ring of cells.
But Wu, a...