Talking about Spirituality, Religion, and Reproductive Medicine

Imagine having to make some of the most important decisions about your life in just a few weeks’ time and with only limited information. This is the case for those pregnant women who consider the use of prenatal genetic technologies. While advances in genetic science and technology have made it possible to peer into the genetic makeup of the fetus prior to birth, they also raise profound questions not just for pregnant patients and healthcare providers, but also for society as a whole as we ask how to decide if and how to knit new technologies into the fabric of human life.

For many years, medical and scientific communities have recognized the importance of a patient’s values in making decisions about if and how to utilize prenatal genetic tests. Information gained from prenatal genetic screens and diagnostic tests has the potential to inform key decisions about a pregnancy. For some, this information may inform the choice to undergo additional prenatal or intrapartum procedures, prepare for the birth of a child with a severe, potentially life-threatening condition, or end the pregnancy if a serious genetic condition is confirmed by diagnostic testing. 

The term “values” has been used to describe the core framework from which patients base their fundamental beliefs about pregnancy, parenthood, disability, and the quality and meaning of life—both broadly and specifically—in the context of their lives and circumstances. While values can be framed by different personal and cultural constructs, they are often rooted in individuals’ spiritual and religious belief systems, two terms eloquently described in the work of Enhancing Life Project scholar Daniel Sulmasy.

The importance of patients’ values in the decision-making process has become increasingly more prominent with advances in prenatal genetic technologies. Previously, prenatal genetic screening focused on identifying the risk of severe, childhood onset diseases with recognized phenotypes, specifically fetal trisomy 13, trisomy 18, and trisomy 21 (also known as Down syndrome).

But as a result of advanced genomic sequencing technologies, it is now possible to identify a series of other fetal genetic variants with a range of phenotypic severity and age of onset. One new application of this technology is noninvasive prenatal genetic testing (NIPT), a screening test that utilizes small fragments of fetal DNA that reside in the maternal blood to provide information about the chance of the fetus having a series of genetic conditions. The primary advantages of NIPT are that it provides more accurate information about the fetus than other conventional screening tests, it can be performed in the first trimester of pregnancy, and it is non-invasive, requiring a single blood sample from the pregnant woman. While NIPT is not diagnostic at this stage, the hope is that it will eventually replace the need for invasive diagnostic tests, such as amniocentesis or chorionic villus sampling, which have a small but real possibility of iatrogenic miscarriage.

The decision-making process about using conventional prenatal tests has never been a simple one. Yet now the process is far more complex, not just because of the number of conditions which can be identified, but because of the information that can and cannot be obtained about them in the prenatal context. For instance, the presence of a genetic variant cannot predict the severity of the condition at birth or later in life.  So while a pregnant woman has more information after this test, she still does not have all the information. And what is she to do with this information? 

More than ever, patients report that they rely on their values to navigate their options. For some patients, these values stem from their personal spiritual and religious beliefs. In general, studies show that some patients do want to bring their spiritual and religious beliefs and practices to the process of making healthcare choices. Not all patients want to broach the topic of personal beliefs with their healthcare provider, but the desire to discuss or incorporate such beliefs seems to increase when faced with more intense inpatient healthcare choices, such as critical care or end-of-life decisions.

Despite the reported preferences of patients and the growing recognition of the importance of healthcare providers in attending to the religious and spiritual needs of patients, such conversations rarely take place in a way that meets patients’ expectations. This may be explained by research demonstrating that physicians report less confidence in beginning or continuing discussions about faith in the healthcare context, which, in turn, may be a function of the amount of medical curricular time traditionally dedicated to this aspect of communication skills.

These studies shed light on the importance of addressing religion and spirituality in tandem with advances in medical science and technology. In the context of reproductive medicine, the highly-personal, medically-complex choices surrounding fetal genetic tests can be as intense as a critical care or an end-of-life situation. The topics of disability, quality and meaning of life, and pregnancy termination can be lightning-rod issues, made even more volatile when woven with discussions about religion and spirituality. In fact, with the growing recognition of the concept of conscientious objection in the delivery of medicine, it has become increasingly problematic for physicians to address issues of spiritual and religious beliefs in the delivery of reproductive medicine. But for the patient, the concept of conscientious objection in the acceptance of the delivery of medicine must be examined.

As an OB/GYN and bioethicist at the Cleveland Clinic, my research with The Enhancing Life Project looks at these issues in the reproductive medicine context.  In our preliminary studies, my research team has learned from pregnant women that their spiritual and religious framework provides guidance when considering genetic testing decisions. While such considerations have been a part of decision-making for conventional screens and diagnostic tests, they appear to have an even more important role in navigating the layers of uncertainty inherent in utilizing prenatal genetic tests as the pressure to make the “best” decision possible is at its highest.  

Listening to the narratives of pregnant women about how they manage this uncertainty, we have received confirmation of the studies done in non-reproductive contexts: women want a safe forum in which to discuss or question how their available options might align with their values. At the same time, patients report on concerns about the potential consequences of sharing their personal beliefs about pregnancy termination, disability, or quality of life for fear of being negatively judged by their healthcare provider.

Through developing a tool kit of questionnaires, interpretative devices, and training for patients and medical personnel, my Enhancing Life Project research aims to present an important new lens through which to examine the decades-old questions of if and how to utilize the advances of genetic science and technology, with the aim of ensuring that these next-generation genetic technologies will genuinely meet the needs and the values of expectant parents and families. 

Photo courtesy of Mehmet Pinarci via Flickr.