For a long time, Sheryl Grossman felt like she was alone in the world. Growing up in Flossmoor, Ill., she didn’t understand why she was so small, and why she had to see so many doctors. At the age of 14, her parents told her that she had Bloom’s syndrome, a rare autosomal recessive genetic disorder that affects cells’ normal process of DNA repair, resulting in small body size and a high vulnerability to diseases such as cancer, diabetes and immune disorders.
A lawsuit now working its way through federal court is adding an interesting twist to the heated debate over genetic patenting.
Advances in genetic analysis and its medical applications are bringing unprecedented, if uneven, change to the world of Jewish law. Most often, the matter of genetics is considered in the context of issues on either end of life’s spectrum: those that relate to fertility and to the identification of post-mortem human remains.
A federal court ruling striking down patents on two cancer-causing genes has the potential to shake up the world of genetic patenting.
It has been a year filled with anxiety, fear and disappointment for sufferers from Gaucher disease, who are continuing to deal with the fallout from last year’s shutdown of a pharmaceutical plant.
The Social Security Administration has added two genetic diseases that affect Ashkenazi Jews to its Compassionate Allowances list, expediting the awarding of disability aid to sufferers and their families.
A list of places you can go for support and help
The genetics blog at DiscoverMagazine.com, Gene Expression, has an eye-opening post peeling away some of the more intriguing layers in the big new study of Jewish genetic patterns that was published June 3 in the American Journal of Human Genetics and reported the next day in the Forward’s own Shmooze blog.
Randall Belinfante was a bit baffled. When he and his wife went to take blood tests in preparation for starting a family in 2003, he discovered that the screening included a panel of tests for Ashkenazic Jewish genetic disorders. But Belinfante is Sephardic.
Forty years ago, when Dr. Felicia Axelrod began caring for patients with familial dysautonomia at the New York University Medical Center, 50% of parents who had children with the rare genetic disorder could expect to bury them before they reached the age of 5.