Genetic testing: Affordable vs future research

In the wake of a Federal court’s ruling last week against a Utah company holding patents for BRCA1 and BRCA2, Tracing the Tribe has some questions.

On the plus side, Tracing the Tribe believes that companies now wishing to provide lower-cost, more affordable, genetic testing will be able to do so – eventually – although legal experts believe the case will land in the Supreme Court.

Note that Tracing the Tribe is not talking DNA genetic genealogy testing, but rather testing for specific genetic conditions/diseases. The questions are relevant because some patent holders charge high fees for those tests, restricting affordable access to those who may want or need those tests.

Please chime in here, dear readers:

(1) Should genetic testing for specific conditions/diseases be made more affordable and accessible, e.g. low-cost, to everyone?

(2) Should high fees be demanded of those wishing to test – to provide financing for research on those conditions.

(3) Who owns your DNA? (according to this case, it isn’t the DNA patent-holder).

(4) Because this is a Jewish genealogy blog, Tracing the Tribe is well aware that when Tay-Sachs testing (a tragic, nearly fatal by age 3, neurological disease) went worldwide, the incidence of its occurrence dropped by some 98%. This was due to widespread, affordable, accessible testing across the Jewish world. There are many other genetic diseases impacting mostly those of Jewish heritage. Shouldn’t those families have affordable access to lower-cost testing?

According to paper, the DNA industry is waiting to hear the reaction to the ruling .

Scientists and health advocates sued Utah-based Myriad Genetics, which held patents for two genes, BRCA-1 and BRCA-2, linked to breast and ovarian cancers. The groups alleged that the patents were improper because the DNA was a natural substance in the human body. The federal judge sided with the plaintiffs, invalidating parts of the patents.

Ken Alltucker’s article says that researchers and companies are interested because the ruling could impact many other genes.

The ruling is critical because an estimated 20 percent of human genes have been patented. Companies launched based on those patents, with investors betting that companies could profitably develop drugs or devices targeting an individual’s unique DNA.

But critics argue that such patents stymie research. Scientists often are required to get permission from the gene patent holders before using the information for research. Some companies even charge fees to use them.

The story quoted Arizona BioIndustry Association president Robert Green:

“The key in biotechnology is you have to raise a lot of money to get to the cure and get to the product. You can only raise that money if investors know you have some patent protection. If you don’t have that, there is no incentive for people to invest in these risky technologies.”

Some 20% of human genes have been patented, according to the story. Investors betted that companies could develop drugs or devices based on a unique DNA.

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