In 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:
- Ethics Committee Opinion No. 390 “Ethical Decision Making in Obstetrics & Gynecology” (2007)
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.
- Ethics Committee Opinion No. 439 “Informed Consent” (2009)
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.”