Wednesday, February 29, 2012

This Is About Execution, Baby

New business ventures succeed only if they have a strong business plan. You must find or create a need for your product. And then you must latch on to that need and promulgate it over and over until it becomes a necessity... stitch it into the fabric of your culture... make it the gold standard.

And that is exactly what the companies Sequenom and Verinata are doing with their prenatal blood tests that can indicate whether or not a fetus has Down syndrome. They are capitalizing on old fears, outdated ideas and stereotypes, and the need for a perfect child to the tune of an estimated 2 billion dollars a year.

Today published an article, written by Luke Timmerman, touting Verinata’s release of their version of the MaterniT21 blood test developed by Sequenom,

"The promise of this eventual capability has been in play for more than 20 years. Now when it’s finally here, there’s a wonder and awe in the community,” says Caren Mason, Verinata’s CEO.

Awe and wonder... I don’t think that is what I feel. Pissed off is what I feel. If you have time, go read the article. It provides the most straight-forward admission of what this push for prenatal testing is about, money. I am not against prenatal testing but I am against pressure to get prenatal testing and/or to terminate based on the results of testing.

The company has hired genetic counselors to help doctors with communicating results to patients, and has people working on economic impact, which it hopes will persuade insurers to cover the cost of the test over time, Mason says.

Ms. Mason, it strikes me that there is a strong conflict of interest in your statements. The only way you convince insurance companies that covering the cost of your test is economically sound is to ensure them that the results of such testing will lead to the terminations of “medically expensive” children. So, to make your test worth it’s cost, your genetic counselors need to help doctors communicate to pregnant women that they should abort their babies with Ds.

It is beyond unethical for these companies to hire people to “help” doctors communicate with their patients. That kind of manipulation for financial gain should be illegal. I am pro-choice but to me that means a completely informed choice not a “choice” pressured by a doctor pressured by a genetic counselor hired by a company making billions off the whole scheme.

Don’t go running to invest your money quite yet as Timmerman goes on to write,

There are a million things that could sink the endeavor, whether it’s competition, litigation, insurance resistance, or physician skepticism. There’s even potential for political and moral debates to sidetrack the company, as people argue over whether it’s ethical to use this kind of information to potentially abort a fetus.

While it might be ethical to use information about your fetus to decide if you want to continue the pregnancy, it is not ethical to insinuate that people with Down syndrome are too expensive to allow them their lives.

What else is not ethical? The constant articles dredging up (in a positive way, you know, with the intent of putting them to rest) old statistics, stereotypes, labels, and fears that serve to reiterate a negativity around Down syndrome.

And what I view as most unethical is a doctor or diagnostics professional not sharing the readily available information that gives a woman the freedom to research and educate herself about the baby she is carrying and what its life might be like.

Sadly, Mason does not seem to let ethics get in the way of money making,

She sounds deeply determined to get this one right. “This is about execution, execution, execution,” she says.

Yeah, Mason you got that right.

So here is my question readers, should companies like Verinata and Sequenom be required to share the results of their "economic impact" studies and the genetic counselors' coaching plans that will be used to "help doctors communicate with patients" with the general public?

In case you don't have time to read the article, here is my "favorite" comment on it so far. I wonder exactly what "it" is that he wants people to think about.

I reckon the biotech segment is pretty hot right now. Why is this guy not writing the article about Sequenom? Really…..Think about it………….$$$$$


L.L. Barkat said...

Oh! That ending literally gave me shivers. Your use of her words to get down to the profundity—wow.

David Rupert said...

The industry is a huge money maker. What kind of society are we where we would allow, let alone get rich off the murder of our most innocents?

RissaRoo said...

I can hardly contain my fury over this whole issue. I read an article last week about a family that is suing the hospital because their doctor did not suggest prenatal genetic testing and their child was born with Cystic Fibrosis. They claim they would have aborted had they known and they are suing for...get ready..."Wrongful Birth". What. Have. We. Done. I pray for the babies whose lives are at stake because of this new DS test...and for our nation as a whole. God have mercy on us.

Patti said...

LOVE this post. working on a similar one- thanks for the inspiration !

Not a Perfect Mom said...

I feel like I'm going to throw up

Lisa said...

Yes, these companies should provide the studies and the literature they are developing to the public. They should be accountable and clear about their motives.

Each of the three companies that has brought a "Down syndrome diagnostic test" to market would like their test to be the gold standard in diagnosing undesirable conditions so that physicians and clinicians use the test above all others...and then recommend terminations of the detected, expensive humans...because then insurance companies will be willing to cover the cost of the tests under preventative care. Is that right?

The moneymaking potential in the test is clear, as evidenced by the excitement expressed by the CEO of Verinata and the company's investors.

But what about the human aspect to all of this? Every single one of us should be asking the question: where is this taking us?

Simply Darlene said...

Yes, for full disclosure.

Eight years ago on a Friday night, and the day after I accepted the Lord as my Savior, the nurse from my high-risk pregnancy Dr. office called and told me that all signs point to my child being born with "all sorts of things wrong with it." She gave me some options and then told me to come in for genetic counseling. Talk about an attack of the enemy.

To make a long story short, I called her back Monday morning and set her straight as to how we would and would not proceed with the pregnancy. Then I asked her how she could offer termination options, etc. She lowered her voice to a barely audible whisper and told me, "They make me say it. I don't believe in their ways either, but I need this job. I am sorry."

Money is indeed the root of many evils.

sandra sims said...

Having my first child at 37 I was repeatedly told I should get various prenatal tests, all of which, except for diabetes test, I declined. Like you I am not against the use of tests but they should never be pushed on patients. The economic impact of unnecessary testing is increased health care costs for the mother-to-be and for all of us. I have also personally experienced a situation where a doctor ordered a test, I believe because he was a partner in the endoscopy center. A simple sonogram 3 years later revealed gallstones. Money should not be a factor in which tests are or are not prescribed.

Mike Sullivan said...

Verinata's CEO got wrong thing right: "There’s even potential for political and moral debates to sidetrack the company, as people argue over whether it’s ethical to use this kind of information to potentially abort a fetus." Sounds like aknowledging intent to me.

Anonymous said...

Prenatal diagnostic testing for chromosome anueploidies (such as down syndrome) have been available for many years through amniocentesis and CVS. The issue with those procedures is that they are invasive and have a small risk for miscarriage. These new tests allow patients to receive similarily accurate test results without having an invasive procedure or an increased risk for miscarriage (it's just a blood draw). These tests are not being forced on patients. They are made available to women who are at an increased risk to have a child with a chromosome abnormality. Whether the patient chooses to have the test and what they do with that information is up to them.

TUC said...


I have already addressed your comment in a guest post on another advocate's blog. The issues are not nearly as simple as you suggest :-) Below is the intro paragraph with a link to the rest if you are interested:

"Hiding under the cloak of, “We are simply offering women a safer prenatal test and what they do with the results is up to them,” is a potential $2 billion dollar a year profit that depends directly and solely on the decisions that women make. This means that, like it or not, those profits will play a role in the public narrative depicting what life with Down syndrome is like."

Anonymous said...

Yes, it's wrong that companies try to monopolize genetic tests (take BRCA1 and 2, for example). That's my issue with it. The cost will be less if more companies are allowed to run the test. As far as the moral issues... The reality is that those who would like a definitive answer to the question of whether or not their fetus has aneuploidy will undergo CVS or amniocentesis. Increasingly CVS, as the rate of miscarriage is nearly the same as for amnio

Anonymous said...

I think there are 2 points to consider:
(1) invasive testing (amnio and CVS) causes the miscarriage of more healthy babies than the number who are diagnosed with Downs,
(2) access to information is our right, regardless of how we use it. The industry is trying to provide safer, faster and less costly access to information

What is done beyond that is personal. The "company" genetic counselors are there to sell tests to doctors. Better if they were independent. Counseling should be done before the test, and afterward only as requested, by unbiased professionals who are there for the mother's(and family's) benefit only. The public has no place telling women what to do -- it's a decision for her, her partner (hopefully) and her doctor, only.

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