Henrietta Lacks Revisited

When I first blogged about Henrietta Lacks a couple of years ago, I titled the blog "Right to Own Our Own Bodies". I'm on the road in Salt Lake City attending the Federation of Eastern European Family History Societies conference so this update post will be briefer than normal. However, this morning's news certainly warrants attention.

Several news outlets including The Guardian and Associated Press Francis S Collins, Director of the National Institutes of Health announced yesterday that an agreement had been reached with family members after six decades:

"Under the agreement, two family members will sit on a six-member committee that will regulate access to the genetic code.

"The main issue was the privacy concern and what information in the future might be revealed," David Lacks Jr., grandson of Henrietta Lacks, said at a news conference.

Jeri Lacks Whye, a granddaughter who lives in Baltimore, said: "In the past, the Lacks family has been left in the dark" about research stemming from HeLa cells. Now, "we are excited to be part of the important HeLa science to come."

Behind the scenes negotiations have been underway since March to reach this landmark arrangement. This follows on the heels of the Supreme Court decision in the Myriad Genomics case earlier this summer.

Finally some humanity is being used to guide this exploding new technology!

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.