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Opinion: Why Our Genes Should Not Be Patented

Catherine Corman and her father are both BRCA carriers. (Courtesy of Catherine Corman)

Catherine Corman and her father are both BRCA carriers. (Courtesy of Catherine Corman)

By Cathy Corman
Guest Blogger

My father had a radical mastectomy in 1975.

He’d visited a general surgeon to check an eraser-sized lump he’d noticed in his left “breast,” which turned out to be malignant. Researchers in the 1980s pinpointed two kinds of genetic mutations that dramatically increase the odds of developing breast and ovarian cancer. They named these mutations BRCA 1 and 2.

By 1996, Myriad Genetics, a company in Utah, was offering a test that could identify people with BRCA mutations. I strong-armed my father into taking the test and held my breath as we waited for results. We learned that we are both BRCA carriers. For my dad, the result was retrospectively predictive. He had the mutation and developed breast cancer. For me, a healthy 37-year-old mother of young triplets, the implications weren’t so clear. I weighed my options and rolled the dice. By the fall of 1998, I’d had elective surgery to remove my thus-far cancer-free breasts and ovaries.

Along with the rest of the nation, I was on pins and needles last week listening to arguments in front of the Supreme Court about the constitutionality of “Obamacare.” I was also holding my breath, waiting for the decision the justices delivered last week concerning a challenge to Myriad’s monopoly on BRCA DNA and BRCA testing. Researchers, geneticists, and the American Civil Liberties Union asked justices on the Supreme Court to reconsider an appellate court’s ruling that upheld Myriad’s patent of the genetic material. The justices sent the case back to the appellate court and asked it to revisit its decision in light of a related case. This might bring good news or bad for those of us carrying BRCA mutations, but, in any case, the implications of the decision will reach far beyond the small number of us genetically predisposed to reproductive cancers.

Families with histories of any number of inherited diseases — from heart failure to diabetes to mental illness to autoimmune disorders – will increasingly share their DNA with researchers looking for genetic clues. If companies can patent our DNA as Myriad has done, they can, under current law, prevent us from receiving affordable testing and innovative, effective treatments for diseases that have the potential to take our lives. Continue reading

Incidentalome: Accidental Gene Findings You May Not Want To Know

DNA double helix (National Human Genome Research Institute)

DNA double helix (National Human Genome Research Institute)


You’ve heard of the genome — a full collection of DNA — and perhaps the proteome, a full complement of proteins. Now, I’d like to introduce a delicious new word that may soon be relevant in many a doctor’s office: The incidentalome.

What is it? Dr. Robert Green , a medical geneticist at Brigham and Women’s Hospital and Harvard Medical School, offers this helpful analogy: Say you get an X-ray because you think you might have cracked a rib and the radiologist notices a shadow on your lung that appears to be a tumor. That finding is “incidental,” because it turned up even though you weren’t looking for it.

Translate that to the dawning era of genomics in medicine. As DNA analysis gets exponentially cheaper and eventually becomes routine in our care, the labs that sequence our full genomes will be turning up all sorts of extraneous information. A scan ordered for, say, a heart problem could turn up a genetic variant that means you’re predisposed to cancer. Or that you’re at heightened risk for diabetes or Alzheimer’s disease.

What to do? The gene finding only suggests an increased or decreased risk, mind you, not a certainty. Should the lab that finds it tell the doctor who’s treating you? And should your doctor tell you?

‘What is the value of telling people something you’re pretty damned sure they’re going to jump to the wrong conclusion about?’

These incidentalome questions arose first in the context of large-scale genome research, Dr. Green notes, among scientists who wondered what their obligation was to tell subjects about genetic findings that they had stumbled upon. (What if, for example, a subject who has grown up male turns out to have the genes of a female?)

But it is poised to become a question for the clinic: The Laboratory for Molecular Medicine at Partners Center for Personalized Genetics Medicine expects to begin offering whole-genome sequencing as a clinical service as early as this July, he said, and nationally, a few other institutions — Baylor, Wisconsin — are already offering clinical sequencing.

So now might be a time for us all to start thinking: What would you want to know? You may not have been curious enough to pay for one of the direct-to-consumer services that analyze people’s genes, but what if your doctor in the not-too-distant future has the information anyway? Continue reading

Daily Rounds: Money Fueled Alcohol Tax Repeal; Surprising Shift On Gene Patents; Biogen Cuts; Election Effects On Health Reform

Money fuels repeal of alcohol tax – The Boston Globe “The alcohol industry, which contributed the vast majority of the nearly $2.5 million to the Vote Yes on One Committee, far outspent the opposition. Beer giant Anheuser-Busch contributed $88,110, and the Beer Distributors of Massachusetts gave nearly $300,000. The Committee Against Repeal of the Alcohol Tax didn’t even raise $200,000, according to the latest finance reports filed with the state.” (Boston Globe)

Feds Surprise Biotech Industry With Gene Patent Rule : NPR “The Justice Department is proposing to overturn 30 years of legal precedent by sharply limiting patents on genes. The government surprised just about everyone who follows this issue when it suggested this change of policy in a court filing last week.” (npr.org)

Biogen to ax 650 workers – BostonHerald.com The giant Weston-based biotechnology firm said it expects to see a total savings of $300 million due to a combination of moves, including shutting down offices in Waltham, Wellesley and San Diego. The company also said it will nix its cardiovascular and cancer-treatment research programs. (Boston Herald)

And about those midterm elections:

Medical News: Obama Will Consider ACA Modifications – in Washington-Watch, Reform from MedPage Today But, he continued, “If the Republicans have ideas on how to improve our healthcare system, if they want to suggest modifications that would deliver faster and more effective reform, I’m happy to consider some of those ideas.” (medpagetoday.com)

Voters oust half of House Democrats who opposed health-care law “Did Democrats dig their own graves by passing the unpopular health-care bill last year? That remains uncertain: The midterm elections Tuesday provided zero clarity on this often-debated question.” (The Washington Post)

To Save Money, Save the Health Care Act – NYTimes.com “If the newly elected representatives and senators are truly concerned about rising health care costs, they should work to deploy the law’s cost-containment measures fully rather than try to repeal them.” (The New York Times)