Are Your Genes Still Free?

It gets murkier and murkier. The day after the Supreme Court ruled that natural human genes could not be patented, Gene by Gene [and perhaps Ambry Genetics] started offering BRCA1 and BRCA2 testing for $999. Myriad Genomics had been offering it for  about $4,000. Great news for womankind. But now Myriad has sued.

“If [Ambry and Gene by Gene] are proved wrong, and I think they will be, it will be at the expense of women who want to be tested,” Gold said. “It’s legal, but not ethical.” For Professor Gold's comment in context read the full story in Wednesday's The Daily Pennsylvanian.

Dr. D agrees with Ambry Genetics' claim that our genes should be free to express their vital information:

Although that expression cannot be free (as in no cost); it should not be restricted from most women because of artificially high pricing. 

I at least partly agree with Professor Gold. I am not a patent lawyer. I am also not a geneticist. Therefore, I do not claim to understand all the legal and biological intricacies of this current law suit. I don't have an opinion as to whether of not patent law gives Myriad a legal leg to stand on. However, I strongly believe that Myriad's position is not ethical. Not many women can draw on the financial resources Angelina Jolie could draw on when she had to make a potentially life or death decision. However, they still need access to the most relevant information their body can give them before they make that decision.

Disclosure: I am an unpaid volunteer manager for two surname DNA projects hosted at Family Tree DNA (FTDNA). FTDNA is a subsidiary of Gene by Gene. FTDNA is one of four genetic genealogy labs through which I have tested my own DNA. I have no financial interest in any of these companies.

Genetics provide cancer insight

Today's Tennessean carries an interesting article about medical screening through DNA testing:

Genetics provide cancer insight | The Tennessean | tennessean.com

In the article

Dr. Joann Boughman, executive vice president of the American Society of Human Genetics in Bethesda, Md., said genetic counselors can provide context and help with decision-making.

"It’s important for individuals to know their family medical history, which may require some detective work to gather, Boughman said.

“It’s an engagement process, and it isn’t always rapid, and it can be very uncomfortable,” she said. But “once you start talking to your family in a reasonable way about this and explain, ‘Everybody is at risk for something; let’s figure out if, as a group, we’re at risk for something special,’ that people will start to open up.”

Dr. Boughman advocates having your results sent to your physician for help in interpretation and context. If this is going to work, more physicians are going to have to become much more conversant in genomic medicine.

You may also wish to consult:
www.talkhealthhistory.org 
familyhistory.hhs.gov 
Whatever you to do be proactive and take charge of your medical treatment planning. Your medical providers may or may not be prepared to do so on your behalf. Hopefully, you can be equal partners in deciding what is best for you and your family.