Cleverly, Wallace Stevens’ poem, “Thirteen Ways of Looking at a Blackbird,” has been invoked to make the case that bioethics, like a blackbird, can be fruitfully contemplated in multiple and diverse ways. [1] Engaging in various ways of looking gives us a richer understanding of the subject of our gaze and strengthens our assessment of it, be it birds or bioethics. I bring this “ways of looking” analogy, loosely adapted, to the current bioethics discussion regarding physician refusal of an in-vitro fertilization (IVF) patient’s request to transfer one or more embryos after preimplantation genetic screening (PSG). [2] The embryos at issue are those that PGS has identified as having an abnormal number of chromosomes (aneuploidy) and thus are deemed at high risk, for example, for Trisomy 21, more commonly known as Down syndrome.
I describe and explore three ways of looking that expand the current, largely principle-based bioethical analyses: 1) a wide-angle recognition of the social-historical context within which the issue of transfer takes place and its implications for bioethical analysis, 2) a close in examination of the claim that physicians have a particular responsibility to refuse to transfer certain embryos, and 3) the inclusion in our field of vision of the principle of justice. These perspectives (and certainly there are more) support a deeper bioethics analysis, raise additional ethical questions, and ultimately contribute to stronger ethical understanding and decision-making.
Fertility services today employ an increasingly sophisticated array of assisted reproductive technologies (ART) to aid a prospective parent in achieving a pregnancy. According to the Centers for Disease Control and Prevention (CDC), in 2016, 263,577 ART cycles occurred in 463 US fertility clinics. Twenty-two per cent of those IVF cycles employed either PGS, to learn the number of chromosomes, or PDG (preimplantation genetic diagnosis), to learn the risk(s) of specific genetic diseases. This 22% is up from 6% of IVF cycles that were PGD/PGS tested in 2012. [3]
Much is unknown about embryos with aneuploidy. We do not know how many such embryos are created via IVF, are transferred, are implanted, become children, and what a particular child’s developmental issues may be. As one commentator put it, “Families and physicians are gazing into five-day-old cells like crystal balls, seeking enlightenment about what might happen over a lifetime.” [4]
Beyond anecdote, we do not know how (and how many) patients decide not to transfer these embryos, how (and how many) physicians refuse to transfer them, and the reasons patients and physicians have for their decisions. We do not know what patients do when their physicians refuse to transfer these embryo(s) or how many embryos are discarded, donated to research, or cryopreserved. All this uncertainty is exacerbated by recent findings that some embryos deemed to have aneuploidy develop into children with no such chromosomal anomalies. [5]
In 2017 the Ethics Committee of the American Society of Reproductive Medicine (ASRM) issued an opinion that outlines ethical arguments that providers might make in honoring or in declining patient requests for transfer of embryos. [6] Written largely by fertility specialists, lawyers, and academic bioethicists, the opinion focuses on what a provider can ethically do when faced with a patient request to transfer an aneuploid embryo. The opinion also recommends that fertility clinics provide written policies regarding embryo transfer that are “the product of an informed, deliberative, and collaborative process.” [6] Fittingly the following three additional “ways of looking” would enhance these clinic processes as well as the wider bioethics discussion.
Looking wide-angle at the moral context: Seeing beyond the medical/legal
Bioethical discussions of physician refusal to transfer in the US are typically framed within a relatively narrow medical-legal context where the relevant social relations involve the patient, the physician, the embryo(s), the clinic, and sometimes legal counsel. A wide-angle lens recognizes the broader social-historical milieu of the medical-legal context that includes, for example, ableism, eugenics, and the exclusion of some individuals from access to treatment.
We know, for instance, that able-bodied persons in the US hold “frequently inaccurate and distorted understandings” of the quality of life of persons with disabilities. [7] These misperceptions are highly relevant for the practice of transfer refusal which is based in part on physician predictions of the quality of life of future children.
A broader moral lens reminds us that state-sponsored, medically enacted eugenic programs of forced sterilization that targeted persons with disabilities as well as low income, persons of color are within our living-memory. Echoes or reenactments of these past eugenic practices are identified by some today as evident in present genetic testing and its related bioethics discourse. Disability scholar and bioethicist Rosemarie Garland-Thomson observes, “the contemporary conversation in bioethics that advocates identifying the best and the worst people and lives and shaping communities accordingly is a velvet eugenics that is enacted today through biomedical technologies that select and support some lives according to criteria assumed to be reasonable and incontrovertible.” [8]
Finally, reproductive medicine’s sometime refusal of equitable access to ARTs for prospective parents who are lesbian, gay, bisexual, transgender, and non-binary persons as well as for persons with disabilities also reflects the discriminatory social-historical context within which fertility services are embedded. [9]
How might we account for this morally problematic context in our ethical assessment of physician refusal of patient requests to transfer genetically anomalous embryos? One strategy might be to insist that an ethical justification of transfer refusal articulate explicitly how this refusal does not reflect or promote the dehumanizing attitudes or practices of ableism, eugenics, and exclusion from treatment. Physicians and clinics would need to make plain how their refusal practices and policies are not “velvet eugenics,” discriminatory, or exclusive despite their social-historical context.
Zooming in: A closer look at physician obligation to refuse transfer
A second “way of looking” examines more closely the lynchpins of ethical arguments, for example here, the claim that physicians have a particular, if not unique, obligation to refuse embryo transfer in particular cases. The ASRM Ethics Committee concludes that “in circumstances in which a child is highly likely to be born with a life-threatening condition that causes severe and early debility with no possibility of reasonable function it is ethically acceptable to refuse to transfer such embryos upon patient request. Physician assistance in the transfer of embryos in this category is ethically problematic and therefore highly discouraged." [6] An obvious concern is whether one can accurately predict future debility and function in most cases.
Speaking about medically assisted reproduction in general, the Task Force on Ethics and Law of the European Society of Human Reproduction and Embryology (ESHRE) takes a clear stance, “The fertility specialist should refuse to collaborate in the parental project of the would be parents if he or she judges that there is a high risk of serious harm to the future child.” [10] ESHRE grounds this strong normative position in a specific professional responsibility: “The fertility specialist’s responsibility is due to the specificity of infertility treatment. Its specificity lies in the fact that treatment is not limited to managing a medical or physical deficiency but that it results ideally in the conception of another person. The physician carries joint responsibility for the welfare of the child because of his or her causal and intentional contribution to the parental project.” [10]
The ASRM Opinion does not justify physician responsibility by proximity to conception but rather by an appeal (in part) to the principle of reproductive nonmaleficence understood as “a physician’s obligation not to inflict harm in the course of delivering reproductive health care.” [6] More specifically, “Transferring an embryo that is highly likely to result in the birth of a child with a serious disease or disability can be interpreted as the physician causing harm by facilitating the birth of an unhealthy person.” [6] Here harm resides in the physician’s action: the transfer of the embryo—however we might understand “harm.” As such, physicians violate their obligation to do no harm when they transfer aneuploid embryos and consequently facilitate the birth of certain children.
In contrast the Opinion continues, ”At the same time, it should be acknowledged that the physician is not responsible for causing the genetic anomaly and it is the anomaly that directly causes harm to the resulting child.” [6] Here harm resides in the anomaly and not in the physician action, seemingly absolving the physician of causing harm. Then again, the claim that the anomaly “directly causes harm” may also suggest that someone or something indirectly causes harm. Perhaps the physician? These ambiguities point to the need for a yet-closer examination and articulation of ethical basis of physician refusal to transfer.
Another ambiguity regarding physician responsibility arises when we observe that physicians transfer some embryos with unknown risk of life-threatening conditions. As noted, only a minority of IVF cycles are PGD/PGS tested. Untested embryos have varying degrees of anomaly risk making it inevitable that in the course of transferring untested embryos over time, some embryos will be transferred that are “highly likely to result in the birth of a child with a serious disease or disability.” [6] According to the ASRM standard, these transfers too would seem to risk causing harm and violate the physician obligation of nonmaleficence. That said, in practice, these transfers appear not to be sufficiently ethically problematic to warrant physician refusal to transfer. This seeming double standard intensifies the question of what the motivation for refusal is, given that only some embryos—post-PGS embryos deemed at particular risk—are refused for transfer.
Pointing in a somewhat different direction, a brief comment about the grounds of physician motivation to refuse transfer made by a member of the ASRM Ethics Committee that created the 2017 Opinion warrants serious further study: “Concerns about potential legal liability may provide the strongest tug toward transfer refusal.” [9] Such an inquiry should be part of any close-in “way of looking” that continues to examine the grounding of physician responsibility to refuse embryo transfer.
Justice: Who Participates, Who Decides?
A third “way of looking” moves the principle of justice from the periphery to the center of our field of vision. The fledgling bioethics literature about physician refusal of embryo transfer has focused largely on the principles of respect for autonomy—patient and physician, beneficence, and nonmaleficence. Drawing our attention to participatory justice, understood generally as persons having effective voices in bioethical discussion and policy making, expands the scope of moral authority regarding transfer refusal. [11]
As noted, most participants in this bioethical discussion have been physicians in reproductive medicine and their professional societies, attorneys, and academics. Notably missing are the substantial and diverse perspectives of prospective parents, persons with disabilities, and other interested members of society. The refusal to transfer certain embryos has the potential to alter society’s membership: to reduce or virtually eliminate groups of persons with certain disabilities. The prospect of significant societal impact makes transfer refusal not simply a professional issue but also a public health and otherwise societal issue. As such, ethical consideration of the transfer refusal practice should include significant public, including patient, participation. Given that persons with disabilities are likely to be seriously affected, their perspectives deserve particularly strong voice and consideration in both the bioethics discussion and in public and private policy-making.
A recent study of Belgian couples using preimplantation genetic testing finds, not surprisingly, that patients think differently than physicians about the considerations for and against embryo transfer. [12] Interestingly, many prospective parents weighted duty to family and society more strongly than child welfare in their calculus about transfer. They also held mixed views about the nature of physician responsibility in transfer decisions. Such qualitative studies are an important means to learning about some of those persons deeply affected by this issue.
The personal narratives of reproductive medicine patients now appear in popular magazines and online platforms. [13] Often marveling at the benefits of reproductive technologies, these prospective and actual parents also offer cogent critiques of the limitations of current fertility practices including physician refusal to transfer certain embryos. Also, because ART patients are disproportionately wealthy and white, efforts to include the public must not rely solely on patient voices, important though they are. Justice will require the creation of new forms of public participation involving novel ways of bringing effective voices to bioethical discussion and policy making.
In summary, these three “ways of looking” at the ethics of transfer refusal: a wide-angle view of the social context; a close in look at physician responsibility; and a field of vision inclusive of justice, deepen and nuance our bioethics analysis, raise formerly under-examined moral concerns, and have the potential to strengthen ethical justification in professional decision-making and in clinic policies.
[1] Sulmasy, Daniel P. and Jeremy Sugarman. "The Many Methods of Medical Ethics (Or, Thirteen Ways of Looking at a Blackbird)." In: Methods in Medical Ethics edited byDaniel P. Sulmasy and Jeremy Sugarman. 3–19(Washington, D.C.: Georgetown University Press, 2001).
[2] >PGS has been recently renamed preimplantation genetic testing for aneuploidy (PGT-A).
[3] Centers for Disease Control and Prevention, American Society for Reproductive Medicine, Society for Assisted Reproductive Technology. 2016 Assisted Reproductive Technology National Summary Report. Atlanta (GA): US Dept of Health and Human Services; 2018 https://www.cdc.gov/art/pdf/2016-report/ART-2016-National-Summary-Report.pdf. (Accessed February 24, 2019).
[4] Joseph, Andrew. "A baby with a disease gene or no baby at all: Genetic testing of embryos creates an ethical morass." STAT (Boston, MA) October 23, 2017.
[5] Victor, Andrea R., Jack C. Tyndall, Alan J. Brake, Laura T. Lepkowsky, Alex E. Murphy, Darren K. Griffin, Rajiv C. McCoy, et al. "One hundred mosaic embryos transferred prospectively in a single clinic: exploring when and why they result in healthy pregnancies." Fertility and Sterility 111, no. 2 (2019): 280–293. https://doi.org/10.1016/j.fertnstert.2018.12.012.
[6] Ethics Committee of the American Society for Reproductive Medicine. "Transferring embryos with genetic anomalies detected in preimplantation testing: an Ethics Committee Opinion." Fertility and Sterility 107, no. 5 (2017): 1130–1135. https://doi.org/10.1016/j.fertnstert.2017.02.121.
[7] Albrecht, Gary L. and Patrick J. Devlieger. "The disability paradox: high quality of life against all odds." Social Science and Medicine 48, no. 8 (1999): 977-988.
[8] Garland-Thomson, Rosemarie. "Human Biodiversity Conservation: A Consensual Ethical Principle." American Journal of Bioethics 15, no. 6 (2015): 13-15. https://doi.org/10.1080/15265161.2015.1028663.
[9] Daar, Judith. "A clash at the petri dish: transferring embryos with known genetic anomalies." Journal of Law and the Biosciences 5, no. 2 (2018): 219-261. https://doi.org/10.1093/jlb/lsy015.
[10] ESHRE Task Force on Ethics and Law including; Pennings, Guido, Guido de Wert, Françoise Shenfield, Jacques Cohen, Basil Tarlatzis, Paul Devroey. "ESHRE Task Force on Ethics and Law 13: the welfare of the child in medically assisted reproduction." Human Reproduction Open 22, no. 10 (2007): 3585-2588. https://doi.org/10.1093/humrep/dem237.
[11] Galarneau, Charlene. Communities of Health Care Justice (New Brunswick, NJ: Rutgers University Press, 2016).
[12] Hens, Kristien, Maryse Bonduelle, Christine de Die-Smulders, Inge Liebaers. "Blurring boundaries. Interviews with PGT couples about comprehensive chromosome screening." European Journal of Medical Genetics 62, no. 12 (2018). https://doi.org/10.1016/j.ejmg.2018.12.009.
[13] Hall, Stephen S. "A New Last Chance." New York Magazine (New York, NY) September 18, 2017.
