By Joseph B. Fanning

from GeneWatch 26-4
Aug-Oct 2013

s.w. anderson / genewatchIn a recent issue of Pediatrics, a girl, diagnosed prenatally with trisomy 18 and complex cardiac defects, raised ethical concerns for providers and parents about how to best care for her. The parents asked that all treatment offerings exclude considerations of the child's genetic profile:

As parents, our challenge was to uphold our firm conviction that decisions regarding life and death are the sole province of our Maker while at the same time respecting the feelings and consciences of those who would be caring for our daughter (and loving those care providers as well). We believe that the knowledge and skills of the medical staff are a gift of God, and should be used in the furtherance of life, not in its destruction.[1]

The obstetric, genetics, fetal medicine and cardiac teams had different professional opinions about the appropriate medical options. Undoubtedly, some of the health care providers did not share the religious beliefs of the parents.

The commitments of these stakeholders generate real differences that can be attributed to the practices of clinical genetics and religion. How are differences that emerge from these activities resolved? Some would argue that scientific and religious worldviews are incommensurable, lacking the common resources needed for shared inferences.[2] But true incommensurability is rare. My purpose is to show how shared decision making can engage stakeholders with religious and genetic commitments in a process of navigation and negotiation that helps decide what to do.

As a healthcare ethics consultant, I seek to support shared decision making in a variety of clinical settings. Arriving at shared decisions in health care is difficult work requiring skill and effort to manage different perspectives. This process is especially challenging when clinicians' technical expertise is hard to grasp and when patients or their family have complex psychosocial situations that clinicians do not understand or endorse. Clinical situations always bring particular configurations of concern that must be addressed; however, cultural attitudes and habits related to genetic and religious practices can create distinctive barriers to a deliberative process. Naming and understanding these social patterns can help overcome the collective anxiety they often produce.

Richard Rorty once called religion a "conversation stopper."[3] When people realize a divergence in religious practice, whether at a dinner party or in an examination room, they often will start talking about something else. The norm is to halt religious lines of conversation at the first sight of difference. In the U.S. context, curiosity about religious/spiritual differences is stifled for a multitude of reasons, many of which can be traced back to political guarantees of religious liberty underwritten by religion's restricted role in the public square. When patients/families raise religious concerns during ethics consultations, I observe clinicians reluctant to ask questions about how the patient/family's religious practices apply to this medical situation. When I ask providers about their hesitation, a common response is that they want to keep a clean boundary between their medical authority and the autonomy of the patient/family's religious practice. Below I propose that shared decision making requires navigating and negotiating between perspectives while being respectful of boundaries. 

 A person's genetic inheritance is deeply personal, inescapably political, and for some, indelibly religious. Genetics, both in scientific discourse and healthcare practice, is strongly associated with personal identity and discrimination. For better or worse, our cultural network (e.g. science, politics, and religion) has sent and reinforced a powerful message: "My DNA is a unique blueprint for my life. It plays a central role in my being." These messages about genetic identity are inextricably tied to historical lessons about eugenics. We must all be vigilant against the temptation to draw lines rashly between acceptable and unacceptable genotypes. Such discrimination in the name of genetic "advancement" usurps, according to some, a supra-human authority.[4] And geneticists have fed religious concerns by appropriating religious language to describe the centrality and universality of their findings. In the 1960s, Robert Sinsheimer referred to the genetic code as the "Book of Life"[5] and, in 1996, James Watson famously asked, "If we don't play god, who will?"[6] These bold claims have inadvertently reinforced both the religious meaning and religious suspicion of genetics.

Let's look at how these cultural norms might intersect in the situation described in the opening paragraph. Imagine listening in on the first care conference about the girl with trisomy 18. The parents are using the word "baby" and the clinicians are describing her as a "fetus." These distinct references do not stop the conversation; to the contrary, communication skills have been honed to gloss over such terminological differences. Nonetheless, the word variation marks a potentially important divide. For these parents, the meaning of "baby" might be linked to an unqualified religious commitment to sustain human life at all costs, whereas for the providers, "fetus," depending on gestational age, is connected to the medically reasonable option of terminating a pregnancy. Potential sources of conflict remain implicit in these terms. When the parents first heard, "trisomy 18," they likely were presented with an accurate description of the syndrome's negative health effects including its high mortality rate and limited treatment options. These parents expressed a responsibility to profess their faith in the child's Creator and to urge providers not to discriminate based on chromosome count. Every stakeholder in this situation presumably wants to act in ways that benefit this child/fetus but the rules for defining benefit appear to be very different.

I offer three observations about shared decision making that demonstrate how shared decisions do not require sharing a religion but allow for religion to be genuinely engaged.

1. Shared decision making depends on the quality of the therapeutic relationship.

Relationships in healthcare are the conduits through which all care is provided. Whether the clinical information is strong or weak, the treatment options clear or ambiguous, the deliberation takes place within an interpersonal space where the quality of the engagement either supports or undermines the trust and respect needed to make health care decisions. A successful shared decision making relationship does not embody respect through a simple equality that presumes to distribute authority evenly. Instead, shared decision making should seek what Michael Walzer has called "complex equality," where authority is distributed based on a person's ability to take responsibility in a particular sphere of activity, e.g. parenting and surgery.[7] Assessment of a treatment's benefit can be complex precisely because clinicians and parents/patients are both entitled to have opinions about treatment benefits and burdens in relation to qualities of life. I often say to clinicians that benefit is a negotiated status and sometime parties cannot agree to the terms. If the relationship has the capacity to hold such differences, then disagreements can occur in a space of compassion that informs decisions about whether cooperation is possible.

2. The goal of shared decision making is to reach agreement about what to do in the situation.

This seemingly simple target is remarkable for what it does not seek to achieve. Mutual understanding complete with common principles or beliefs is not required to share a plan of action. The parents in the case above cannot fully understand the situation from the medical perspective, nor can the healthcare team comprehend it fully from the parent's perspective. Every stakeholder, however, should make a good faith effort to share their perspective and to learn about others' perspectives for the sake of resolving the situation that brings their interests and concerns together. Aligning perspectives completely is an impossible goal but aligning stakeholder commitments around realistic options is often achievable.

3. The primary task in shared decision making is to navigate and negotiate perspectives in ways that help achieve the goal of deciding what to do.

Robert Brandom is skeptical that we can fully share concepts even in our simplest communication efforts, but he observes that "what is shared [in linguistic practice] is a capacity to navigate and traverse differences in points of view, to specify contents from different points of view."[8] As the parents and healthcare teams deliberate about what to do, they speak and listen in effort to share their perspectives. Navigation begins with offering information and substituting words that allow the respective stakeholders to specify the set of concerns from their point of view. Think about the health care team (fetus, patient) and the parents (baby, daughter) substituting one term for another when referring to the same ultrasound image. The healthcare teams identified three significant medical risks when considering treatment options for this patient: "1) a ductal dependent cardiac defect that would require at least three surgeries for palliation 2) intrauterine growth restriction 3) the chromosomal abnormality."[9] The parents specified "that a diagnosis of trisomy 18, or any other genetic defect, should not be immediately classified as fatal."[10] And the negotiation begins.

Negotiating perspectives takes place when stakeholders identify and respond to commitments that are in tension or incompatible. The parents requested that the health care teams exclude trisomy 18 as a factor in selecting treatment offerings. But what does this request mean? The parents continue, "Each case should be considered individually for the medical challenges it represents, and if intervention can result in the extension of life, all medically indicated treatment options should be offered, with final decisions left to the families involved."[11] On this view, the extension of life without qualification is a proportionate benefit to any burden or harm this child may undergo in treatment. The parents have a religious obligation to endorse any action that will extend human life. The healthcare providers have a professional obligation to avoid harming patients and to act only with a reasonable likelihood of proportionate benefits. And the natural history of trisomy 18 must be factored into calculations of chances for short-term benefits, for example, surviving postnatal heart surgery, and the longer-term benefits of living, what all parties agreed would be, a very short life. The parents would only agree to withdrawing life-sustaining treatment at birth if the chance of death from heart surgery was 100%. We now see a potentially intractable conflict over how benefit and appropriate treatment are elaborated. And the practices of religion and genetics, along with many other factors, are contributing to the divide.

How did the case get resolved? The ethics consultant proposed that it was "ethically permissible to initiate interventions to attain greater postnatal certainty about the cardiac lesion."[12] The parents' religious understanding of a longer-term benefit - unqualified extension of life - was given deference by permitting this benefit to justify a high-risk surgery if survival were deemed possible. Perhaps the medical perspective on the longer-term benefits of treatment could have been given more weight; regardless, this example demonstrates how religion and genetics are actually related in the practice of shared decision making in a health care setting.

Joseph B. Fanning, PhD, is Director of the Clinical Ethics Consultation Service at Vanderbilt University's Center for Biomedical Ethics and Society.



1. Renee D. Boss, Kathryn W. Holmes, Janyne Althaus, Cynda H. Rushton, Hunter McNee and Therea McNee. "Trisomy 18 and Complex Congenital Heart Disease: Seeking the Threshold Benefit." Pediatrics (2013) 132;163.

2. Alasdair MacIntyre. After Virtue. Notre Dame, Indiana: Notre Dame University Press, 1981.

3. Richard Rorty. "Religion as a Conversation-stopper" in Philosophy and Social Hope. New York. Penguin, 1999.

4. Leon Kass. "The Wisdom of Repugnance: Why We Should Ban the Cloning of Human Beings." The New Republic (June 2, 1997).

5. Robert Sinsheimer. The Book of Life. Reading, Mass.:Addison-Wesley, 1967.

6. James Watson. The Lives to Come: The Genetic Revolution and Human Possibilities. New York: Simon and Schuster, 1996.

7. Michael Walzer. Spheres of Justice. New York: Basic Books, 1983.

8. Robert Brandom, Making it Explicit. Cambridge, Mass.: Harvard University Press, 1994.

9. Renee D. Boss et al. "Trisomy 18 and Complex Congenital Heart Disease: Seeking the Threshold Benefit." Pediatrics (2013) 132;162

10. Ibid.,162.

11. Ibid., 163.

12. Ibid., 164.


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