Created demand for prenatal genetic testing

Why is there a demand for prenatal genetic testing? In large part, due to the ethically problematic laboratory marketing efforts aimed at creating that demand.

Permit me a bit of a digression where I describe what prompted this post.

If you live in the United States, I expect at some point each year, you begin seeing billboards, ads on buses, fliers, and, as the date of the event draws near, television ads for certain musical and theatrical acts that are on tour. This is Marketing 101 for performance art companies with a large enough budget to afford marketing costs.

For some performing acts, their name alone sells out the event: Springsteen, McCartney, Gaga.

But, then, there are those acts that I have never heard of, but I’m told are the “event of the year” and a “must see.”

At the top of the post is an example of one such act: Joe Bonamassa. His ads describe him as a blues legend, a Billboard #1 act, and that his show is the “guitar event of the year.” I listen to music almost all day, everyday of almost every variety, and I have never heard a Joe Bonamassa tune to my knowledge.

Now, this is no knock on Joe Bonamassa. Clearly, there are those who like him and attend his shows. But, given the deluge of marketing that leads up to his shows, I have to believe the show’s business model is to flood the market with ads to create demand. Essentially, if you give the appearance that this is indeed the guitar event of the year by a blues guitar legend, then there will be some who choose to attend having had no other exposure to him but don’t want to miss seeing this event of the year.

They manufacture FOMO: Fear Of Missing Out.

Another similar phenomenon is Shen Yun. As the billboard tells you, it is “a must see.” What is it that you must see about Shen Yun? Apparently, it is an Asian dance troupe with flowing robes and silks. Beyond that, I am unsure as I have not seen this must see.

And, admitting my ignorance about the show, I again don’t want to knock the merits of the Shen Yun performance. It very well may be “a must see.” I, however, have never seen it anywhere else, e.g. on a variety or late night talk show, or featured on 60 minutes or CBS Sunday Morning.

Instead, the tidal wave of marketing that leads up to the Shen Yun show again strikes me as an intentional measure to create demand for seeing the show.

Created demand for prenatal genetic testing

So, seeing ads for Joe Bonamassa and Shen Yun got me thinking about the marketing efforts of the cell free DNA screening laboratories.

Several posts on this site and others have detailed the unique in the industry marketing push by these laboratories.

Traditionally, prenatal genetic testing like amniocentesis or quad testing was developed at universities and then rolled out like most traditional medical offerings. There was not a splash of “amnio: get accurate, definitive results backed by science”.

But there was such a splash when it came to cfDNA screening. So much so that journalists documented and fellow practitioners cautioned that the emphasis on cfDNA’s claimed accuracy was resulting in providers and patients alike being misled on the true accuracy of cfDNA results. Most often, those results’ positive predictive values were not the 99% accuracy touted by the labs in their brochures, but instead much lower.

Still, the marketing push continues. Below are screen grabs from the three longest-offering labs of cfDNA screening:

As you can see, Seqeunom, the maker of MaterniT21, describes its test to patients as offering “a wealth of knowledge”. Illumina, the maker of verifi, commands the patient to “rethink prenatal screening. Think NIPT.” Under this directive is a patient testimonial describing cfDNA screening as “incredible. … To have that peace of mind really made a difference for us.”

Harmony, the last test’s website shown, has a page for Providers (so do Sequenom & Illumina). Harmony, like Illumina, commands the physician to “Offer Harmony”. Why? Harmony tells the doctor: for the physician, “reliability and accuracy.” For the doctor’s patients, “peace of mind.”

I have addressed the merits of the actual claims these labs have made in other posts (like how many women who accept prenatal screening do not describe it as providing peace of mind, but instead have increased anxiety no matter the results because of screening tests having false positives and false negatives).

Instead, in keeping with what prompted this post, it just seems to me like the labs are following the Joe Bonomassa/Shen Yun marketing strategy of creating demand for their products.

All professional guidelines recognize that cfDNA screening can be offered to patients and those of ACMG recommend it be offered to all pregnant women. Harmony simply could’ve said that when giving the reason for why a physician should “Offer Harmony”: “ACMG guidelines recommend offering cfDNA screening to all expectant patients.”

But, as for the messages to patients, none of the professional guidelines recognize “peace of mind” as the reason for offering prenatal genetic screening to expectant mothers. Instead, clinical studies have found that cfDNA screening has a greater accuracy among high-risk pregnancies than conventional screening and since ACOG et al. recommend offering conventional screening, they similarly recognize that cfDNA screening can be offered.

The “peace of mind” meme sought to be reinforced by the labs’ marketing is their version of creating FOMO among pregnant women: “this (likely paid model) pregnant woman on our screen says our test gave her peace of mind, don’t you want peace of mind, too?”

This meme stands in contrast to something I read from I believe Adrianne Asch or possibly a contributor to the book she and Erik Parens edited, Prenatal Testing and Disability Rights (or very likely it is from another independent source). What was written then was how prior to the availability of prenatal genetic testing, mothers did not report anxiety about giving birth to a child with Down syndrome. For younger moms, the chances were so low, it was unlikely they would. Similarly, for older moms, the likelihood remained low, but even with their increased chance, they simply accepted that it was a chance.

With the onset of prenatal genetic testing, an author then described the effect of creating “The tentative pregnancy.” Whereas before, if you got pregnant and opted not to have an abortion, then you planned on continuing your pregnancy. The introduction of prenatal genetic testing provided another step in the algorithm, that maybe, depending on the result of the test result, the mom may terminate what was otherwise a pregnancy she intended to continue.

Similar to the caveat given for Joe Bonomassa and Shen Yun, this is not to say that there are not some women who indeed received peace of mind from their prenatal test results. And, that goes for results both positive and negative. The marketing memes are appealing to a mother’s desire to know her child is “healthy” and a negative screen result may give her that reassurance. But I know of some moms where the pregnancy was suspected of possibly more serious conditions and are relived when the test comes back positive for “just” Down syndrome.

With that caveat noted, still the labs would not be investing in their elaborate exhibit booths, updating their marketing messages to describe the claimed value of their testing regularly, if they weren’t trying to create demand for their products. If everyone already wanted prenatal genetic testing, the labs could pocket that expense of marketing and add it to their profits. The existence of their not insignificant marketing budgets and efforts is evidence that they are trying to create demand.

And, that is why their materials are inherently biased.

The labs are not investing millions of dollars in R&D and then in the expense of conducting their tests so that they can then invest other hundreds of thousands of dollars in materials they provide to physicians so that patients may choose NOT to have their tests. Everything they create for public review is all towards increasing the number of physicians who offer their tests and the number of patients who choose their “brand” of cfDNA screening.

Joe Bonomassa may be a guitar legend and put on a great show. Shen Yun might be a must see event. And, MaterniT21, Harmony, and verifi may provide “peace of mind.” But none of them are relying on the merits of their offering for people to make an independent choice to pay for their products. All are engaged in massive marketing efforts to convince you to buy what they’re selling.

For the entertainment industry, that’s perfectly fine and expected.

But for those offering tests that are premised on respecting a woman’s right to make an independent, informed choice, it is ethically problematic.