Non-Invasive Prenatal Screening is not the Holy Grail, and it’s wrong to call it that–Part 2 of 2

NIPS Holy GrailIn yesterday’s post, I covered why it is factually wrong to call Non-Invasive Prenatal Screening (NIPS) the “Holy Grail” of prenatal testing. Here’s why it is ethically wrong to call it that.

The Holy Grail has legendary powers of healing. In Indiana Jones and the Last Crusade, Indy pours water from the cup onto his father’s gunshot wound and miraculously he is healed. So, if offered to drink from a legendary cup that promised healing, who of us would refuse it?

And, that is why it was wrong for Anne Drapkin Lyerly to refer to NIPS as the Holy Grail of prenatal testing, as she did in her recent post at the Huffington Post. Indeed, Lyerly’s own writings caution against such weighted language when counseling about prenatal testing.

The whole ethical justification for prenatal testing for Down syndrome–a condition that cannot be treated if detected prenatally or postnatally–is that the expectant mother’s right to control her pregnancy justifies providing her information so that she can decide to terminate that pregnancy, make plans for her child to be adopted, or be prepared for the birth of her child. The whole industry of prenatal genetic testing rests on that principle of choice. But, when you refer to the technology as some legendary, holy object from which only good things can come, you reduce the ability to exercise independent choice, which necessarily requires the ability to decline the offer of prenatal testing.

What is more, Lyerly has written of the need to respect a woman’s choice as being integral to a “good birth” and chaired ACOG’s ethics committee which issued opinions emphasizing the need for informed choice in the context of prenatal genetic testing.

Lyerly has a new book out that expands on the research she has published on a “good birth.” She writes that a good birth “is one that we have a hand in shaping … a birth that’s informed by things we value, a birth in which we’ve been able to decide among options”. Referring to prenatal testing as the Holy Grail or “a gift,” as Lyerly also does in her Huffington Post piece, improperly influences that ability to decide freely among options.

Further, while chair of ACOG’s ethics committee, Lyerly presided over opinions which recognized the need to respect a woman’s right to make a voluntary choice about prenatal testing and exercise caution when counseling about prenatal testing:

Practitioners should seek to uncover their own biases and endeavor to maintain objectivity in the face of those biases, while disclosing to the patient any personal biases that could influence the practitioner’s recommendations. A patient’s right to make her own decisions about medical issues extends to the right to refuse recommended medical treatment. The freedom to accept or refuse recommended medical treatment has legal as well as ethical foundations.

Free consent … involves the ability to choose among options and to select a course other than what may be recommended. It is important for physicians to be cognizant of their own beliefs and values during the informed consent process. Physicians should have insight into how their opinions may affect the way in which information is presented to patients and, as a result, influence the patient’s decision to accept or decline a therapy. … In many cases, the physician’s personal and professional values and clinical experiences do, to some degree, influence the presentation and discussion of therapeutic options with patients. Although not considered frank manipulation or coercion, care should be taken that the physician’s perspectives do not unduly influence a patient’s voluntary decision making.

So by Lyerly’s own research and opinions issued under her leadership, a woman’s decision about prenatal testing should be informed by her values and physicians risk unduly influencing free consent depending on how options are presented and discussed. And, yet, she is promoting NIPS as the “Holy Grail” of prenatal testing.

No doubt, Lyerly considered NIPS to be the “Holy Grail” for her particular situation. But imagine how this view would inform her word choice and presentation of options to a patient who is a devout Catholic and would like nothing more than to drink from the Holy Grail. Or, how someone inclined to not accept prenatal testing is offered NIPS as “a gift.” And, given her position as the associate director of UNC-Chapel Hill’s Center for Bioethics and former chair of ACOG’s ethics committee, think of those influenced by the writings of this credentialed professional. The point of writing the column was to influence thinking about NIPS as the Holy Grail.

Lyerly’s own research and ethical advice issued while ACOG’s ethics committee chair advise against counseling patients in a way that would improperly influence patients’ decisions on whether to accept prenatal genetic testing. And, that is why it was wrong for Lyerly to refer to NIPS as the “Holy Grail.”

Comments

  1. Liverly, without being aware of it, reveals too well her own predisposition towards eliminating the ‘unfit’ which at this time, largely consists of children with trisomy 21 . Perhaps she operates under the assumption that she is in the majority when she seeks to inform mothers of the possible complications of life with trisomy 21, while completely neglecting her obligation to inform the parents that there has never been a better time to be born with Down syndrome.
    That’s our job as parent-advocates, make sure that both sides of the story are told. If only we had access to the mothers, this would be possible, but those with Liverly’s mindset seem determined to make certain we don’t.

  2. Jeffrey Kraus says:

    Ethics and choice are not the only reason for prenatal testing, economics is also a factor. NIPS can be used for all pregnancies without risk of miscarriage. Society has set a goal of eliminating Down syndrome and the only way to do that now is birth prevention. I would like to see Medicaid make this test with selective termination a requirement for continued benefits.

    • Again, if you haven’t spent any more time getting to know the population you say society has set a goal of eliminating, you are remaining willfully ignorant. That said, and because you seem handy at Googling to find links, I invite you to share official public statements that support your premise that “Society has set a goal of eliminating Down syndrome.” This is not to invite other bigoted eugenicists mouthing off, but actual policy statements that state that the goal of official state policy is to eliminate Down syndrome.

      • Jeffrey Kraus says:

        From http://www.cdph.ca.gov/programs/PNS/Pages/default.aspx

        The activities of the California Prenatal Screening Program (PNS) are focused on detecting birth defects during pregnancy. PNS is working to assure prenatal screening services and follow-up diagnostic services, where indicated, are available to all pregnant women in California.  Prenatal screening currently offers three types of screening tests to pregnant women in order to identify individuals who are at increased risk for carrying a fetus with a specific birth defect.

        The above quote shows that the purpose of prenatal screening is to prevent birth defects as state policy.

        From Chance to Choice: Genetics and Justice, by Dan W. Brock, Norman Daniels, Daniel , p 55

        A case in point is the current debate over screening for Down Syndrome and other genetic and chromosomal abnormalities.  According to Kevles (1985), a U.S.  government analyst estimated in 1974 that $5 billion spent over 20 years to reduce the incidence of Down Syndrome (by voluntary screening and abortion) would, assuming a reduction of 50 percent, save the United States more than $18 billion; and other screening programs had the potential to save another $75-100 billion.  A more recent proposal to extend a three-level screening program for Down syndrome to all pregnant women included an estimate of cost savings (Elkins and Brown 1993).  Is this eugenics?  Carlson (1996) quotes a physician who resolutely avoids the term: “Sometimes you need to abandon words that have common meanings that connote the wrong ethics or morals.”  Carlson  adds, “But only the words have changed” .

        The above quote shows that the purpose of prenatal screening is to save money.

    • Are you related to Karl Binding Kraus?

  3. It’s the Delphi technique, otherwise known as “Doctor knows best”.

  4. I watched Lyerly on the Huffington documentary. She is full of fear. She knows nothing of ethics concerning screening out the Down syndrome community. The truth is that she is a eugencist who is fearful of anyone not meeting her self-fulling definition of perfection. She should butt out of making judgemental statements about our children and sort out her own stuff. If she is influencual in ACOG ethics, it is no wonder our children are being selected out of the human race.

  5. expectANT mother says:

    I think that I understand the concerns in this post about how NIPS and its results may be presented to pregnant women in a biased fashion that encourages the termination/abortion of fetuses with trisomies. I do think its very sad, almost unfathomable, that such a high percentage of women choose to terminate babies with Down syndrome. And I do wish that people were far more informed and would be more careful in how they present this information so that it would not come across as (or perhaps fulfill) an eugenics agenda and unduly influence women.

    However as a pregnant woman and a practicing Catholic/Christian who did have NIPS, a Harmony test to be specific, and who received a positive result for Down syndrome I am very grateful for NIPS and I think its a good test for women to take. The best currently available without risking a miscarriage. I wouldn’t call it a “Holy Grail” (certainly a very poor choice of words given the sacred reference) but NIPS is such a significant improvement over everything else offered to women that of course we are impressed with it.

    Before taking the Harmony test I was already told I was high risk from my age (40), 1st & 2nd trimester blood tests, and a high NT measurement as well as other ultrasound findings that only showed up in my NT window, i.e. before 14 weeks. Another friend of mine in a similar situation was similarly scared by her pre NIPS results yet put at ease by an NIPT. She did not want to risk having an amniocentesis and I also will not have an amniocentesis due to its risks of miscarriage. My Harmony test result with its high degree of accuracy has allowed me to take its results seriously as compared to the previous odds given me. The odds given women from other prenatal tests (except amniocentesis) are all over the place and unnecessarily cause a lot of women a lot of stress which encourages them to have an amniocentesis. An amnio puts babies at risk of miscarriage and can cause more stress.

    I now have ample time to adjust and prepare our family for a child with Down syndrome. So far in 4 of the 5+ memoirs I’ve read about parents of children with Down syndrome parents have been freaked out and depressed by this diagnosis after birth at a time when they are already overwhelmed with postpartum care for a newborn, enduring sleep deprivation, and should be wholeheartedly bonding with their baby. I couldn’t be more grateful to have this time now to come to terms, get educated, and correct me and my family’s misconceptions before the birth. This would be so much harder to do after the birth when time could be critical to provide my child the proper care, understanding, and early intervention therapies that he/she needs. Instead I plan to wholeheartedly celebrate the birth and I will be prepared to meet my child’s special needs.

    And if after birth I find that my NIPS, and the other prenatal tests that pointed in the same direction, ends up being a false positive then at least I have gained more appreciation, sensitivity, and understanding for individuals and families with Down syndrome.

    • Thank you for sharing your experience and for appreciating my point on trying not to slant the way prenatal testing is offered. In an early post, I made the point that NIPS does have a nonmaleficent role (to get all bioethics-y) for precisely the point you make: that it’s higher accuracy can be used to minimize the exposure to the risk of miscarriage with invasive testing. Other studies report your experience as well, that moms are relying on the NIPS results in order to forgo the risk of miscarriage with invasive testing. I’m glad the results you received allowed you to prepare for your child’s birth and would be curious as to what resources you found helpful?

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  1. […] Drapkin Lyerely, OB-GYN and bioethicist at UNC-Chapel Hill, “I think some of the challenges that are faced are these questions of counseling. … How much do you need to talk to somebody […]

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